Jackson
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| Jackson Jean-Baptiste--2005 |
In December 2001, I was fired from OSF-Saint Francis Medical Center in Peoria.
In July 2002, even though OSF told the public that with my departure nothing would happen to Haitian Hearts, OSF withdrew all funding for Haitian Hearts patients.
In December 2002, after OSF had received 445,000 dollars from Haitian Hearts for the year, OSF-Children's Hospital of Illinois called the American Consulate in Port au Prince and asked the Consulate officials not to grant any visas for Haitian children suffering from heart conditions which would allow them to travel to Peoria for heart surgery.
In January 2003, I picketed OSF-Children's Hospital of Illinois (CHOI) for their medical abandonment of Haitian children needing to come to CHOI for heart surgery or repeat heart surgery.
In 2003 OSF-Saint Francis Medical Center (SFMC) sent me a certified letter stating that OSF--SFMC would not accept any medical referral from me.
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Between 2003 and 2005, my wife Maria and I traveled to Haiti to work and screen children with heart problems.
Jackson Jean-Baptiste was a young man I had brought to Children's Hospital of Illinois in the late '90s for heart surgery for his rheumatic heart condition, which had left several of his heart valves destroyed.
I followed Jackson in Haiti in the early 2000s and, unfortunately, I determined that he needed further heart surgery. I asked OSF-CHOI to reaccept him for surgery, but did not receive any answer. It is not uncommon for people who have had heart surgery to need repeat surgeries.
The following is an email to OSF from me regarding Jackson in May 2005:
May, 2005
Dear Mr. Marshall, Keith, Paul, and Sister Judith Ann,
While in Haiti in January, I rexamined a former Haitian Hearts patient. Jackson Jean-Baptiste is now 20 years old. He had been operated on for valve problems several years ago at CHOI. He is weak and cachectic now and his heart did not sound healthy. (Medicine brought from Peoria by Haitian Hearts has been keeping him alive.)
I ordered an echocardiogram in Haiti and it was hand delivered to me recently in Peoria by one the families that cared for Jean-Baptiste in Peoria. They recently saw him in Haiti and are very concerned. Unfortunately, Jean-Baptistre needs more surgery on his mitral valve. Rheumatic fever can be a relentless disease. His situation is critical. Other medical centers around the U.S. will probably think Jackson is OSF’s responsibility and he is. It is very hard to find other medical centers to provide medical care for Haitian patients who have been operated elsewhere.
In the recent past when I requested that OSF take care of a former patient, Mr. Steffen has sent my requests to Mr. Marshall, OSF’s counsel.This arrangement has always seemed kind of odd to me since the Sister’s still own the medical center. Unfortunately, Mr. Marshall has stated that OSF will not care for Haitian Hearts patients referred by me (even when I have offered full charges.) This does not seem to be in compliance with the Sisters Mission Statements or the Catholic Bishops Directives regarding health care in the United States.
With the recent investigation of OSF-CHOI by the Illinois Attorney General’s office, I feel that the Attorney General’s Charitable Trust Office was very unimpressed with the lack of zeal OSF showed in turning over the Haitian Hearts donor list since we became a 501C3 organization in October, 2002. When Mr. Kramer told me in his office that Haitian Hearts was “becoming too much competition for CHOI”, I was amazed, but now completely understand what he meant. I believe the AG office understands, also.
Jean-Baptiste really needs his mitral valve operated. At the end of 2003,with a significant push from inquiring Haitian Hearts volunteers, Mr.Steffen signed a check from OSF to Haitian Hearts. I did not accept the check or cash it. Who contributed to this check and why were the checks cashed by OSF and not given directly to Haitian Hearts? After two and one-half years we are still in need of our donor list and any other monies donated to Haitian Hearts. Many Haitian children have been and still are dependent on these funds. Haitian Hearts will donate to OSF the uncashed check referred to above for Jean Baptiste’s surgery at OSF, performed by Dr. Geiss, if these simple requests are met. (Dr. Geiss has never refused a Haitian child, encouraged me when I called him using a satellite phone from Haiti to bring the children in need, and Dr. Geiss has never sent a bill.)
Jean-Baptiste and his widowed mother live on the side of a barren mountain in poverty without much hope. He is really sick. Haitian Hearts will try to bring him to Peoria even though Haiti is very unfriendly at the moment. The OSF medical staff and his host family would love to see Jean-Baptiste again. He is begging your mercy, compassion, and honesty.
I will await your response.
Sincerely,
John Carroll, MD
cc: Bishop Jenky, Don Jackson, Father Bliss, Father Driscoll, GeraldMcShane, MD, Dale Geiss, MD
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In November 2005, right before Maria and I left for Haiti, I sent this email to Sister Judith Ann--
Date: Tue Nov 29 09:43:01 2005
From: “Realname” To: sisterjudithann@osfhealth
Subject: Haitian kids
Dear Sister Judith Ann,
Maria and I have spent 4 months in Haiti this year and are returning on Wednesday for our last trip in 2005. Haiti’s situation has never been worse. The economy, infrastructure and violence have paralyzed the majority of Haitians and Haitians that live abroad do not want to return.
I wrote you several months ago about Jackson Jean Baptiste and Faustina. Both of these kids had surgery at OSF several years ago and both need repeat surgery on their mitral valves. They live fairly close to each other on a mountain overlooking the capital. We take them meds from Peoria each trip that lasts 3-4 months. Even with medication, they still need surgery.
Jackson calls his host family in the Peoria area almost weekly telling them how sick he is. According to what I have heard, his legs are now swollen to the point where he cannot walk very far. Thus, he cannot notify Faustina that we are coming and I need to check both again. They both are suffering greatly and need to return to the US.
Jackson’s father was killed in an accident and his mother is illiterate and unemployed like most Haitians. While Jackson was in Peoria, his brother died in Haiti from sickle cell anemia. Neither child has electricity in their home or running water. Faustina’s father does not live with the family and Faustina signs things for her mother since her mother does not read or write.
The host families in the Peoria area would love to see these kids again. The doctors that took care of them at OSF would love to take care of them again. However, the host families are afraid to ask OSF because they fear OSF and the ramifications of going against the local health care industry. It must make you so sad that people are afraid of our Catholic medical center which was actually founded for people like Jackson and Faustina.
Sister, you need to be their advocate and change their lives for the better. No one else will. If you allowed these two kids to return to Peoria for heart surgery, you would be “changing” the culture of OSF from the inside, which would be remarkable.
Keith Steffen, OSF’s administrator, told me (and others0 in the privacy of his office that fear is a good thing. He repeated this statement several times. I believe Keith actually meant this. I believe that members of Peoria’s business community, Catholic priests, and Bishop Jenky himself do not want to get on the bad side of OSF. The public is pretty much out of luck influencing any change with OSF and they know it. OSF even has the editorial board of the Peoria Journal Star covering for OSF’s abandonment of former Haitian Hearts patients who are sick and we have offered full or partial charges to OSF. Maybe the PJS would think that no one would believe that OSF-CHOI was going to let Willie die last year if we had not found a medical center to give him a new pacemaker. (We offered OSF full charges to change Willie’s pacemaker. Keith appeared to be laughing out the administrative window as he stood slightly behind Sister Cansisia when Willie and I were standing on the sidewalk…Haitians are always looking “in”, but usually do not get “in”. OSF’s poster child, Willie, didn’t make it in either.) Now, Jackson and Faustina…
Sister, you told me that you would never turn down a child. I am asking you to accept these two children back that are slowly dying of heart problems that could be and should be operated here in Peoria. You would be following your mission statements also. Please don’t let your corporate people, administrative people, and lawyer sway you away from your mission statements. With the 250 million dollar project you have undertaken, don’t you have room for two kids that really would show what your mission is about? Technology and buildings are great, but these two kids alone are more important than the entire campus renovation. I know you know that.
You stated to me that the medical environment in the US is very vicious. You were referring to conduct and ethics inside hospitals. I agree completely with you. Don’t be afraid, Sister. Tell Keith to stop his “fear” statements. The lower and middle class in Peoria would love to see you and the other Sisters regain control of your hospital.
Please respond this time. With your support, I will bring Jackson and Faustina to Peoria for surgery and the best Christmas they could ever have.
Sincerely,
Dr. John
My cell phone in Haiti is 011-509-411-7545 or drjohn@mtco.com
If you would like to join us in Haiti sometime before Dec. 17, let me know. We work with the Daughters of Charity (St. Vincent de Paul) in their busy clinics just outside the capital. You could stay with the Sisters and help us in the clinic each day.
(I never received a response.)
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In December 2005, Maria and I traveled to Haiti once again, and Jackson and his mother met us with a bunch of sweet mangoes as a gift. However, Jackson looked terrible. His body was bloated and filled with fluid from his congestive heart failure.
Jackson and his mother and siblings lived on the side of a mountain in a two-room shack overlooking Port au Prince. His dad was dead having been killed when his rope was intentionally cut and he fell to his death at the quarry where he worked.
It didn't take long to figure out that I was not sending Jackson home that day in 2005. It was a very long and difficult trip and Jackson looked like he was on the verge of death.
So Maria and I told Jackson's mom that we would keep him with us to see if I could "tune him up". They both agreed with this plan and his mother went back up the mountain without him.
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The following segments of this blog post document Jackson's struggle with us in Haiti and our observations of this sad and epic event that took place in 2005 and 2006.
THURSDAY, DECEMBER 01, 2005
Jackson Jean-Baptiste is sitting in a chaise lounge in front of our television, dozing and watching a French documentary about bears. He came at 8 this morning. His mother and his sister had to carry him down the mountain on a chair, and then they rode 3 tap taps to get here. Jackson can barely walk and needs help getting out of a chair. We were so alarmed by the state of his health, we told his mother and sister to leave him with us.
Jackson is in congestive heart failure. His abdomen, legs, and feet are all swollen with fluid his body cannot get rid of. More ominously, his lungs are water-filled also, making it difficult for him to breathe. John has been giving him mega doses of furosemide, a heavy-duty diuretic to help his body get rid of fluid. The problem is, because of Jackson's reduced blood flow, his body isn't absorbing the diuretic and he's not getting rid of much water. He is going to spend the night with us, and we will figure out our next step tomorrow. Jackson is reclining in one of the poolside chairs we dragged down to our room as he cannot lie down flat and still breathe.
Jackson has been to Peoria twice to have his aortic and mitral heart valves repaired. These valves were damaged by rheumatic fever. He has been back in Haiti for a couple of years. This past spring, John examined Jackson and had concerns, which caused him to send Jackson for an echocardiogram in Port-au-Prince. This scan revealed that Jackson's mitral valve was malfunctioning and that he needs more surgery, most likely a valve replacement. On multiple occasions, including as recently as this morning, we have offered OSF St. Francis Medical Center $10,000 to accept Jackson, their former patient for a valve replacement but they have either refused or not responded. We are praying they will change their minds.
Now, our primary concern is keeping Jackson alive. He is a very sick young man and has probably been critically ill for several weeks. It is a helpless feeling having him in our room, but we are doing what we can. Jackson needs help.
FRIDAY, DECEMBER 02, 2005
Jackson Update: He's Improving!
Jackson passed the night with us. I awoke to hear him using the bathroom, which was truly an uplifting sound. Go kidneys! Go! The diuretics were reaching these important organs, and they were doing their job, expelling some of Jackson's unwanted fluid. John also explained to me in technical medical language I don't fully understand how lasix gets rid of fluid in the lungs, even when it doesn't leave the body.
The good news is that today, Jackson's physical exam was much better. John could get a blood pressure on him--in the 90s, which is what it has been in the past. Yesterday, he could get no pressure. His lungs are clear, he has a little appetite, and it's easier for him to move around. He had some crackers and trail mix this morning. I don't think he slept too much last night, but at least he could lie down. His mom and sister came to visit this morning and they will return on Sunday, so Jackson will be hanging with us for at least a couple more days. Keep him in your prayers.
Jackson passed the night with us. I awoke to hear him using the bathroom, which was truly an uplifting sound. Go kidneys! Go! The diuretics were reaching these important organs, and they were doing their job, expelling some of Jackson's unwanted fluid. John also explained to me in technical medical language I don't fully understand how lasix gets rid of fluid in the lungs, even when it doesn't leave the body.
The good news is that today, Jackson's physical exam was much better. John could get a blood pressure on him--in the 90s, which is what it has been in the past. Yesterday, he could get no pressure. His lungs are clear, he has a little appetite, and it's easier for him to move around. He had some crackers and trail mix this morning. I don't think he slept too much last night, but at least he could lie down. His mom and sister came to visit this morning and they will return on Sunday, so Jackson will be hanging with us for at least a couple more days. Keep him in your prayers.
Diane's Letter to Joe Piccione and Patricia Gibson
Diane’s Letter to Joe Piccione and Patricia Gibson
Date: Fri, 2 Dec 2005 16:07:29 -0600
Subject: Jackson and Haitian Hearts
Dear Mr. Piccione and Patricia,
I received an email from John yesterday from Haiti and I have a feeling that you are aware of the situation regarding Jackson. I know that when we sat in those “meetings” on the two occasions, none of us evert hought that we would be in this situation: where St. Francis is refusing the care of a child who already had received care from them, and also when they were told that we as an organization would first of all pay $10,000 for his surgery, and then, I believe that John even offered them full coverage. When I received the email from John yesterday begging for help, sadly I really did not know where to turn. This is such an unethical situation in my eyes and this heart patient is being ignored because he is associated with the Carroll name. I just arrived home from working at OSF today and I am so saddened when I walk in there, I cannot even explain to you how desperate a feeling it is. When I have worked there for so long and I do not know who in the world could turn this situation around. I think that if we all read about this in a magazine somewhere, we would not even believe that this could be happening when the hospital has even been offered payment. Since the “meetings” with the diocese, the hospital, I believe feels that they are exempt “morally” from helping with any of these patients. I do not believe that these meetings had anything to do with never treating another Haitian Hearts patient. I believe that it is that we were unable to come to a financial agreement at that time, but to refuse care to a patient that has already been taken care of there when money is being offered for his care is beyond belief. I look around at my own children, and I wonder also if there were one of the children that we took care of, such as Katina, if I would be fighting harder for this to happen.The sad part is that I do not believe that there are other avenues for me to take to try and change any of this. I feel stuck in this political mess and I cannot even begin to comprehend how it must be for John and Maria right now to watch this boy die, and try to explain to his family that our hospital refused treatment for him even though payment was offered. I could not feel sadder or more embarrassed by the attitude we have shown this boy.I really believe it is time to look at this with open eyes, and not just feel like we can turn our backs on Jackson because he is a Haitian Hearts patient. We need to finally step up and do what is right and good. I try to explain to my children what is happening, and I find that I have no words to try to make sense of this for them, because it is so senseless. Please tell me what else I can do to make this right and to get Jackson here. I know that John and Maria will also be in great danger in Haiti right now to get his VISA to get here, but they are willing to do all of this if given the okay. Please just tell me what I can do to change the way everyone is thinking and dealing with this. I really appreciate any help that you might be able to give us.
Sincerely,
Diane Carroll
(Diane, is my sister-in-law and an R.N. at OSF. She received no response from Joe Piccione, OSF Corporate Ethicist or from Patricia Gibson, Chancellor of the Catholic Diocese of Peoria.)
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WEDNESDAY, DECEMBER 07, 2005
I am looking at Jackson stretched out on the chaise lounge in our room. He has the hands and feet of a man but the rest of his body—narrow torso and shoulders, thin arms—looks like that a 13-year-old adolescent and not of a 22-year-old. Malnutrition and heart disease have ravaged his body. At the end of Jackson’s last trip to Peoria, I remember seeing him standing in the darkness of his host parents’ front yard, with broad strapping shoulders, but the last two years of Haiti and heart disease have worn them down.
While staying with us, Jackson has dining on nice fattening American cuisine—cheeseburgers, pizza, and spaghetti. John has been making him eat mangoes and bananas to replace the potassium the diuretics drain from his body. He wanders the hotel grounds while we are gone. People befriend him; Carol from Canada let him watch “National Treasure” in her room. Jackson is quiet and low maintenance. It’s often difficult to know how he is feeling because his demeanor is the same whether he is very sick or better. I think this place must seem a little like a high class prison to him, especially when the television service was out. But the important thing is, he’s alive and we want to keep him this way. We are hoping a hospital in the U.S. will play Santa Claus to this very sick young man.
TUESDAY, DECEMBER 13, 2005
Jackson had a rough night. As John explained, the heart has to work harder when the body is prone and doesn’t have gravity going for it. In Jackson’s case, fluid builds up around his lungs and causes him discomfort and distress; it must feel a little like drowning. He was moving around a lot last night, in a futile attempt to get comfortable. John gave him some more diuretics and aspirin, and I think he was finally able to get to sleep.
Jackson has been sick since he was 15-years-old, when his heart valve damaged by rheumatic fever finally caught up with him. If not for his surgeries in Illinois, he would be dead like his two older brothers who succumbed to the kinds of things that Haiti throws at a person. Jackson lives with his mom and sisters on the side of a mountain. When his mom visits him, it takes her about three hours by tap tap to get here.
Jackson is very quiet; sometimes he even seems sullen. I try to imagine what is life must be like for him, being in Haiti, so close to death, hoping that the blancs who make periodic appearances in his life come through for him with an American hospital. He looks like a boy, but he is a man; he has pride. I think it pains him to have to ask us for food or when people at the hotel stare at his skinny physique.
Prior to bedtime, I sat in our room with Jackson and watched the movie, “Some Came Running,” a 1958 flick starring Frank Sinatra, Shirley Maclaine, Dean Martin, Arthur Kennedy and others. Sinatra plays a WWII vet who shows up in his hometown with a bad attitude and a background as a writer, which he wants to deny. The film is shot in dark, shadowy, atmospheric light. A dance-like alley fight is choreographed to herky-jerky music. I only saw part of the show, and would like to watch it all as well as read the book by James Jones, which it is based on.
While watching the movie, I sipped rum and coke, the perfect drink to accompany an American movie from the fifties. The liquor was courtesy of Jackson: in a touching gesture, he somehow procured two bottles of five star Barbancourt run, which is manufactured here in Haiti, not far from Jackson’s home. The smooth, golden liquid is much cheaper here than in the United States.
This morning, I could see that Jackson’s abdomen was once again bloated. John upped his dosage of furosimide, and we will hope that provides some relief. We are scheduled to go home on Saturday, 12/17, and we still have no hospital for Jackson.
Pleading OSF for Jackson’s Life
Date: Sat Dec 17 09:33:01 2005From: “Realname” To: keith.e.steffen@osfhealthcare.org,paul.s.kramer@osfhealthcare.org,
sisterjudithann@osfhealthcare.org
Subject: Give Jackson another Christmas, please….
Dear Sister, Keith, and Paul,
Today is day #16 that my wife and I have had Jackson in our room with us in Port-au-Prince. His last two nights have been bad with shortness of breath and a lot of vomiting last night. His mitral valve is tight, as you know, which is his main problem. I am doing what I can for him with medications. Have not been able to get any lab work or a CXR on him in two weeks due to his condition and the violence in the streets. We leave Jackson when we go to work in the clinic during the weekdays and hope he is there when we get back.
We were scheduled to fly back to Peoria this morning but have let the tickets lapse and will stay with Jackson until the end. That is the only reasonable choice. He doesn’t trust the Haitian hospitals and for good reason. He doesn’t understand OSF either.
Amazingly, Jackson still does not have an answer from any of you as to whether you will accept him. Please tell Jackson yes or no. Keith and Paul, that is what you are paid the big bucks for…to make the big decisions, like whether a 21-year-old young man will live or die. It shouldn’t be a big decision, but you are dragging it out for months and months. Jackson’s suffering is inhumane at present. If you were here the last two weeks holding his head and watching his heartbeat through his chest wall, you would decide “yes” immediately (I would think). Just think if Jackson were one of your boys when they were that age. You would demand that they get the care they needed. (Keith, on one occasion years ago, you asked me to suture the face of someone close to you, while you cut in front of others to get this done.) But you are not here and never will be, so go on faith and the mission statements of the Sisters. I appeal with you again to do the right thing.
Contrary to what your legal counsel implied last year, it is not easy to find hospitals for Haitian kids because of corporate greed in the US. When hospital corporate leaders are paid enormous salaries and live in huge houses on the north side of Peoria, this isn’t exactly living how St.Francis would have advised. So something has to give. What is giving are the Jackson Jean-Baptiste’s of the world, not the corporate leaders or administrative lifestyles.
You will all have a “good” Christmas. Jackson’s Christmas will be a different type of “good” than yours. The poor really require so little to keep them fairly functional. However, when their infrastructure and technology sink totally below human levels, a few places like Haiti exist, and the Jackson Jean-Baptiste’s suffer immensely. They live in “poverty without dignity”.
We can’t keep turning our back on these people. Aside from the moral reasons that just get in the way sometimes, they do the jobs the developed world needs done and for smaller wages, and, for example, can “supply” their nurses to our dwindling supply in the developed world when hospital corporations go recruiting. It would be to your benefit to keep these countries viable to a point. Haiti is off the curve now and is so dysfunctional, it is hard for us to take advantage of the “business opportunities” they would normally offer if they were just a little better off.
Jackson is OSF’s patient. You never turn away anyone over their race, religion, or inability to pay. Plus, someone is paying for Jackson. The doctors want him in Peoria, even though they are afraid to say due to that fear factor thing. Medtronics will donate the St. Jude’s valve, and the perfusionist will do all his work for free as usual.
Please accept Jackson at OSF and give him another Christmas.
Sincerely,
Dr. John
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John Carroll--Email--December 17, 2005
Email to Haitian Hearts supporters and host families:
Dear Everybody,
Jackson has been with us for 16 days now. His last two nights have been real bad. He has been short of breath, vomiting, and sleeping fitfully.
We decided not to return home today but stay with Jackson until the end. He is alert but quite weak. He can walk some. His heart sounds like a wash machine when I listen to it with his valve problems. With his volume loss and third spacing I cannot get a BP today when I check it. His lungs are clear. He eats when he can and takes his medication.
I wrote Sister, Keith, and Paul again today and gave them his status and again please for his life like I have multiple times this year. Thjey have never answered regarding Jackson. It is so painful for Jackson to die this way especially when he knows there ae so many people that would like to see him survive and a medical community of doctors and nurses in Peoria that would do all they could to help him. His host families want him back too.
This is not what the Christmas season is supposed to be about.
Sincerely,
John
Jackson's Letter to Sister Judith Ann
Jackson’s Letter to Sister Judith Ann
Date: Sat Dec 17 11:24:44 2005From: “Realname” To: sisterjudithann@osfhealthcare.org,keith.e.steffen@osfhealthcare.org,
paul.s.kramer@osfhealthcare.org
Subject: From Jackson Jean-Baptiste to Sister Judith Ann
Sister, this took Jackson over an hour to write.
“Dear Mrs. the president of hospital to Peoria,
Today I’m decide to writing your because I feel I can not keep any more. Mrs. the president I’m asking you from time to time for give me a chance, because I think only you and God how can give me a new life again. Mrs…I’m descend in front of your leg for don’t let me die, please and please Mrs…I’m with for your answer. What now to be able to suffer anymore.”
Jackson Jean-Baptiste
Port-au-Prince,
Haiti
December 17, 2005
SUNDAY, DECEMBER 18, 2005
Jackson has lived his life in a crummy cinderblock house, two hours and several tap tap rides away from here. He is dying, or some days seems to be, in a one star hotel.
John met Jackson when the good doctor brought back Faustina, another child with a heart problem, from the U.S. When Faustina’s relatives came to pick her up, her aunt said, “We know of a boy who also has a very sick heart.” Bring him to me, John said, and the next day Jackson showed up, very sick as advertised.
I doubt he was as sick then as he is now. He is exhausted, catching only a few minutes of sleep here and there, when his body will allow him. He can’t get comfortable; he’s on his back, then his stomach, then his side, then sitting in a chair, holding his head in his hands. He reclines on the chaise lounge with his arms over his head. His abdomen pulsates quickly, like a time bomb; his huge liver vibrates with each beat of his heart. No position feels right when your heart isn’t working properly.
Here’s the physiological explanation for what’s going on: his mitral valve is too tight, a condition known as mitral stenosis. This causes blood to back up in his left ventricle, stretching it to a grotesque size. Blood and fluid also fills his abdomen, which is why his liver is enlarged.
Given the meds he is on, Jackson isn’t getting rid of fluid as well as he might. “It’s hard to pin everything on his mitral stenois,” said John. He thinks there is something else going on, most likely pericarditis. Pericarditis is a restriction of the pericardium, which is the lining around the heart. Jackson probably has scar tissue from his operations which has hardened into a fibrous rind around the heart. As with his valve problems, the only solution for pericarditis is the knife.
The end result of all this physiological malfunction is that Jackson is suffering. He has lived most of his years, only half of them healthy, in a shack on the side of a mountain. Now he is dying in a hotel room with its comparative luxuries of hot water, a flush toilet, and air conditioning. He’s 21; we should be watching him live, not die, especially with something that is curable only 600 miles away.
Still all is not hopeless. I mentioned false hope in a previous post, but I really don’t believe in the concept. It’s oxymoronic: hope, by definition, can’t be hopeless. And today, Jackson got up, wearing his multi-colored swim trunks. “How’d you sleep?” asked John and he nodded, meaning better. He turned on the television and started watching some pseudo-Tex-Mex western staring Martin Short, Chevy Chase, and Steve Martin, all wearing ridiculously oversized black sombreros. A shooting star in the middle of a dark night.
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Letter to Sister, Keith, and Paul re: Jackson Jean-Baptiste
Letter to Sister, Keith, and Paul re: Jackson Jean-Baptiste
Date: Mon Dec 19 18:03:38 2005
Dear Sister, Keith, Paul, and Haitian Hearts Supporters,
In TB clinic this morning we had two kids less than 3 years old with Pott’s disease. This is a disease that has been described through antiquity where TB infects the spine and eats away at a vertebral body. The vertebral body crumbles and an abscess can set up next to it. If the patient survives, it leaves them with a severe curvature of the spine. The good news is that with 18 months of TB treatment, Pott’s disease is curable. One of the kid’s moms has TB herself. She is quite emaciated and put her head on the desktop to rest while the baby was being examined. The baby urinated all over her and she acted like she didn’t even notice. The mother weighs about 80 lbs. She had her other two kids with her to get them screened for TB. All are malnourished. There is no father involved with the family. Poverty is a really evil thing and so is not doing anything about it.
Keith and Paul, Jackson had a bad night again. He was up vomiting in the middle of the night for about 2 hours and very weak this morning. He needs to be pulled up from a lying position. He can walk up some steps but needs to rest at the landing. I titrated his meds again based on his exam. His BP is only 82 today due to his volume loss. His sister came 2 hours early this morning to visit Jackson and she told me that her mom cries all the time. She asked me if Jackson was “grave”. I told her yes.
Keith and Paul, you can change this if you want. You can stop Jackson’s mom’s tears if you want. The host families and doctors and nurses want Jackson at OSF. Why don’t you?
Last week I asked you three if you would search for another medical facility to take care of Jackson since you don’t seem to be interested. Have you found anyone? The Ethical and Religious Directives state that Catholic health care providers need to collaborate with others to help sick people like Jackson. Many people are interested in Jackson’s fate and have collaborated with many people trying to help him. What have you done? Just in case you didn’t know, other medical centers believe Jackson is OSF’s patient, which he is.
When OSF turned your back on Willie Fortune last year and was going to allow him to die with a pacemaker generator that was failing, I thought I would never see anything as bad. When Keith appeared to laugh out his administrative window at Willie and me standing on the sidewalk (as he stood just a few inches behind 89-year-old Sister Canisia’s peripheral vision), that did not really surprise me.
With Jackson, I think you have outdone yourselves. Keith, Jackson’s mom is not laughing. The bottom line is today is the 18th day we have had Jackson with us. We have optimized his medication and he needs surgery. He is going to die soon. His suffering is intense. Sister, you were put in a bad spot four years ago, but this is not an unsolvable problem. Jackson is still counting on you. Please don’t let him down or discount your precious mission statements.
Sincerely,
Dr. John
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Jackson Jean-Baptiste Forum Article--December 21, 2005
About 100 years ago Finley Peter Dunne stated, “The job of a newspaper is to comfort the afflicted and afflict the comfortable.” In this case, Haitian children who desperately need heart surgery need to be comforted, and Peoria’s OSF, our one billion-dollar health care industry, needs to be afflicted.
Haitian Hearts is in Haiti now, and we are caring for a 21-year-old young man named Jean-Baptiste. He was operated on at OSF 6 years ago when he underwent a successful valve repair. He presented to us 10 days ago in acute congestive heart failure. His entire body was swollen with excess fluid, and each breath was difficult for him. Jean Baptiste couldn’t eat, sleep, or walk and stared at us with scared yellow eyes.
Jean-Baptiste needs a new heart valve. I have pleaded with OSF since May to accept him again and have offered OSF Administration $20,000 for his care. (Haitian Hearts donated over 1.1 million dollars to OSF for Haitian children’s’ surgeries in the past.)
Many people in the Peoria area, including his previous host family, have attempted to contact OSF during the last week to advocate for Jean-Baptiste. All of our efforts have resulted in no official answer from OSF regarding their patient. (Other medical centers shy away from patients like Jean-Baptiste because he has been operated on in the past and is more complicated because of his previous surgery.)
The main reason that Jean-Baptiste and other OSF Haitian Hearts patients are being abandoned by OSF’s Administration and legal team is due to my public criticism of OSF and its dangerous conflict of interest with Advanced Medical Transport (AMT) in Peoria. They are monopolizing emergency care when someone calls 911. With OSF’s total support, AMT is the only agency that can give advanced life support or transport emergency patients in Peoria. I would think that if OSF and its political and business supporters in the area did not feel challenged by my allegations, OSF would be more than happy to accept Haitian Hearts money and appear to be following the Sister’s philosophy that insists that no one is turned away…not even Haitians.
My hope for the Journal Star is no different than Mr. Dunne’s. The afflicted may someday be their own family members after a bungled response to a 911 call in Peoria. And for Jean-Baptiste, his discomfort is inhumane, and OSF’s refusal to treat him needs to be investigated and exposed by the Journal Star.
John A. Carroll, M.D.
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WEDNESDAY, DECEMBER 21, 2005
Jackson has rough days and rougher nights: he didn’t sleep at all last night, which only makes him feel worse. He ate a little breakfast this morning and some bread for supper. He is weak and hasn’t left the room today. His mom came to visit and left depressed.
We don’t want Jackson to lose the will to live. This morning, John gave him a pep talk: you must remain strong; people at home are working to find you a hospital. Jackson asks questions we can’t answer: how long will it take? How long will you stay with me? In his mind he is calculating, “How long can I hold on?” The physical and psychological strain of his ordeal is immense. John’s letter about Jackson’s plight was published today in the Peoria Journal Star (see edited version of original letter below). Jackson bites the inside of his mouth to keep from crying and asks, “What did it say?” We are in some weird race against the anatomy of a sick boy and the anatomy of a greedy country.
Almost all of you reading these words, and definitely the girl writing them, will never have to face what Jackson is facing. First, we will never get rheumatic fever. At the hint of strep throat, we will be on cheap antibiotics, stat. Secondly, if we do develop some malfunction of our heart valve, or any serious health problem at all for that matter, we can get care. There will be no languishing on a plastic poolside chair in someone’s hotel room, hoping a hospital in the benevolence of the Christmas season, decides, yes, we will operate on you.
I ask myself, “Why is my life worth anymore than his?” It’s tempting to reply, “That’s just the way the world is.” But only the people who can get care respond like this. When you can’t get care, how can you think anything but, “Why won’t anyone help me?”
The problems we are facing in finding Jackson a hospital, the problems all the people in the developing countries face are caused by sin writ large. We should care and do more.
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December 23, 2005--
Email from John Carroll to Haitian Hearts Supporters--
Dear Haitian Hearts Supporters,
Today is day #21 for Jackson with us here in Port-au-Prince.
Jackson has very bad days mixed in with bad days. I wish I could tell you he has good days, but he doesn't. He didn't come out of the room yesterday and sat in the dark much of the day. I have juggled his meds, changed them, etc. Sometimes it seems to help and other times it doesn't. His mom comes and visits him, but they don't say much. His sister comes sometimes, too. Jackson is depressed as well as being sick. Who wouldn't be?
I heard from three excellent sources in Peoria that Mr. Kramer, Executive Director of Children's Hospital of Illinois, will now apparently allow Jackson to be presented to the "international charities" committee at OSF to see if Jackson is a candidate for OSF's care. Why this decision was made now is not known by me. When the committee will meeti is not known. The lead doctor on the committee is out of town. OSF asked for medical information regarding Jackson, which I presented to them as far back as May and sent them much information during the last 21 days. The committee potentially has almost as much medical information on Jackson that I have. We ca only hope this is a sincere move on their part and not facade.
We have looked high and low for other medical centers for Jackson and many of these centers feel that OSF should follow through with Jackson.
If Jackson is accepted, it is Christmas time as you know, and the American Consulate will be closed much of the time. In one recent 3 weekk period here in Port there were 57 kidnappings. Whitee Amerians are prime targets because of the money gangs think we have and can ask for ransom. Thus, getting Jackson's visa the closer we get to Christmas and to New Year's Day is problematic. If the letters came to the Consulate from an American medical center, and the Consulate was open, we would definitely apply for his visa nad attempt to get it, no matter the risk on the streets. This can take days to happen after the visa application is made. The presidential elections ar scheduled for January 8. I am quite sure that the vagabonds will try and make the streets as unsafe as possible during that time period on top of the existing chaos. The American Consulate may possibly withdraw some of their staff during the unrest which will make getting a visa more difficult. (We were able to get a visa last week for a one year old named Emmanual and he left for the States on Saturday for heart surgery. We also obtained a visa last week for a 6 year old that will be traveling soon, and we will apply for Faustina's visa and for 2 year old Jenny's visa as soon as we can...their passports are done and they have been accepted in the States.)
So the odds for Jackson are not in his favor. OSF appears to not be in any hurry regarding their decision on Jackson. I wish they respected the immediacy of action that needs to be taken by them. Jackson is aware of the "committee" at OSF deciding his fate. this is all too much fo put any one through. Please call OSF Corporate (Jim Moore, Dr. Gerald McShane, Joseph Piccione, Sister Judith Ann, Sister Diane) and OSF-SFMC (Keith, Mr. Kramer) and ecourage them to advocate for Jackson very quickly.
Please pray for Jackson and OSF in your homes and churches on Christmas day.
Sincerely,
John
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MONDAY, DECEMBER 26, 2005
Big things often start with the most happenstance of incidents. Or at least they seem to be happenstance. Thursday evening we were at our usual position in the dining area in front of the computer. Our main worries were keeping Jackson alive and finding a hospital for him in the States. We and Haitian Hearts supporters at home were working on contacts with hospitals in
Minnesota, Connecticut, New York, Alabama, Colorado, Peoria, Bloomington, and Joliet, Illinois. But so far, it was nada, with the shutdown for Christmas fast approaching.
A short man with grey hair and bright, kind, blue eyes pulled up a chair to talk with John. His name is Father Tom Hagan, and he runs an organization called Hands Together, which schools and feeds thousands of children in Cité Soleil and has many other anti-poverty projects in Haiti. Father is one of the few white people whom the gangs allow to pass back and forth through the
treacherous slum. He has been in Haiti for ten years. Father arises at 4:30 every morning to say Mass for the Missionaries of Charity, at their home for abandoned and dying children, where we go to Sunday church. This Thursday before Christmas, Father had brought a group to our place for a special evening meal.
We told Father about the plight of Jackson Jean-Baptiste. He offered to call his friend, U.S. Senator Mike DeWine, a Republican from Ohio. Senator DeWine is the Senate expert in Haiti, having taken a special interest in the country after several visits. He helps support the work of Father Hagan.
Before 9 am the next day, we had an e-mail from one of the Senator’s assistants, Barbara, who said they had been trying to call John’s Haitian cell phone, but had been unable to get through. She left DeWine’s cell and home phone numbers. Later that evening, John called the home phone. Senator DeWine answered, and John explained Jackson’s situation to him. “He is such a nice guy,” remarked John after the call, which kept cutting in and out. “He’s going to call a hospital and tell them about about Jackson.”
The next morning, again before 9 am, we had another e-mail from Barbara, saying that Cleveland Clinic had accepted Jackson! Could this be true--Jackson accepted by one of the best medical centers in the United States? Barbara left the phone number and e-mail of Jeanne, Dr. Cosgrove’s assistant. John immediately called her and made arrangements to e-mail detailed information on Jackson’s condition.
While John was on the phone, I e-mailed the Senator’s office our thanks and also explained another little dilemma we needed help with: Jackson has a Haitian passport, but it expires in May 2006. In order to grant a visa, the U.S. consulate requires that the Haitian passport be good for at least six months; Jackson’s passport misses this deadline by a month. We were in the process of obtaining Jackson a new passport, but in Haiti, these things take time. Was there anything the Senator’s office could do to waive this requirement?
With our first round of e-mailing done for the day, we headed out to run some errands. While we were out, John’s cell phone rang. It was Ingrid from the U.S. consulate’s office asking if we could get to the Haitian immigration department as they would issue Jackson a new passport immediately. We were then to go to the U.S. consulate, and they would have the visa for us. The only problem was that it was 2:20 pm, and the consulate was closing at 3 pm—not enough time to pick up Jackson’s expiring passport and make it through the holiday traffic, to both places by three. After numerous phone calls, we arranged to do this on Tuesday morning.
The last phone call came from the office of U.S. Ambassador Tim Carney. He was concerned because he had heard that we were staying on Delmas 31. “We don’t stay there,” said John, “But we do work there.” “That’s a dangerous area,” said the Ambassador’s assistant. “The Ambassador wants to encourage you to be vigilant.” We thanked him for his concern.
Still hardly believing that Jackson was truly accepted, we trudged back to our lodgings, where, of course, the internet service was down. We were afraid to tell Jackson that we had found a hospital until we saw written confirmation from Cleveland Clinic. Years of working in Haiti makes one suspicious of good news. Upon noticing our concerned faces, the owner offered us the use of his computer, which was receiving the on line connection. In John’s mailbox was
the most beautiful attachment ever: a letter from Cleveland Clinic, saying
that they would provide surgery and medical care for Jackson at no cost!
Jackson was with us when we read the letter. He said, “Tanks.”
We also say thanks to a lot of people: Father Tom Hagan for all his work in Haiti and for caring enough to make the call on behalf of Jackson; Senator Mike DeWine for putting the influence of the most powerful country on earth to work for a poor Haitian youth at the request of people who aren’t even his constituents; U.S. Ambassador Carney for responding to Senator DeWine’s
request and the staff of the embassy and consulate for expediting Jackson’s visa; the head of Haitian immigrations who is willing to meet us at 7:30 Tuesday morning to give Jackson a new passport; Dr. Cosgrove and all the wonderful people at Cleveland Clinic, who by accepting Jackson are truly living their motto, "Every life deserves world class care," the Haitian Hearts
supporters at home who took Jackson’s cause as their own and phoned up a storm to try to find him a hospital; our family and friends who prayed and sent encouraging messages to us. We couldn’t do any of this without you.
Thanks to John, who didn’t hesitate in keeping Jackson with us in our room, who daily examined him, adjusted his meds, worried over him, and who epitomizes Winston Churchill’s great quote, “Never, never, never give up.”
And most of all to thanks be to God, Who sent us His Son, a baby born to poor parents, who was in all worldly ways powerless.
If all goes well, we will be on a plane to Cleveland on Tuesday afternoon.
On December 26, 2005, I sent this email to a cardiologist at Children's Hospital of Illinois. I left his name as "cardiologist" and lightly edited my email.
Email to Children's Hospital of Illinois Cardiologist Re Jackson
Date: 26 Dec 2005
Subject: Jackson
Dear Cardiologist,
I hope you had a good Christmas.
Through some miraculous circumstances during the last couple of days, Jean-Baptiste was accepted at Cleveland Clinic (CC). (They are asking for no money for Jackson.) CC wrote the letters (acceptance letters for Jackson) immediately and Maria and I will apply for his visa to travel tomorrow. We have a lot to do tomorrow morning but if all goes well, sans kidnapping, the three of us will get on an AA flight at 3 PM tomorrow for Cleveland. (There have been dozens of kidnappings in the last 2 months here with Americans as prime targets. The official total of kidnappings in December 2006 was 120.)
Jackson is doing some better. I added spironolactone to his meds and he seemed to start to mobilize some of his ascites and he feels better. He breathes well at rest and I have only seen him really dyspneic once or twice. His heart still sounds terrible, of course. And his liver remains enlarged and pulsatile.
We wish we were bringing Jackson to you. You know the faith I have in you. I never received a response from OSF since my pleading with them for Jackson started in May. Unfortunately, even with YOU advocating for Jackson to the “committee”, I had no faith that they would accept him even for 20,000 dollars. While you were gone for several years, the events that occurred diminished my confidence in CHOI to a very, very low level. I know we all see from where we stand, but some incredible events occurred which does not instill much confidence in the business leaders at OSF or CHOI. Jackson is the third Haitian Hearts patient OSF has rejected in the last one and one-half years—Willie (we offered full charges for his failed pacemaker generator–he was syncopal and in heart failure when I examined him in Haiti in February 04 with a heart rate that did not go above 60), Faustina (we offered 10,000 dollars…fortunately, she has been accepted as well at another medical center for no charge, and she will be leaving Haiti in a week for her mitral stenosis), and Jackson. All 3 kids were/are in terrible shape and OSF-CHOI was going to let them die in Haiti. This is so wrong.
As I said, I want you and the other docs at CHOI and the nursing staff to take care of these kids, but the administrative team at OSF is so incompetent and uncaring about these Haitian Hearts' patients, I don’t ever see CHOI becoming what it really could be with them running the show. You are emblematic of what a children's hospital should be about. I still love OSF because OSF is not the "administrative" team and "corporate." It is the people that give the care at the bedside. There are 5,000 good employees that work at OSF.
There will be other Haitian Hearts' patients that need valve replacement. I know of three right now. I will approach OSF the same way and hope that the current administrators are gone and are replaced with administrators that agree with the Hippocratic oath. My hope is that doctors and nurses in Peoria really publically question the administrative team at OSF and say that patient abandonment like this must stop.
Thank you for reviewing all the echoes over all of the years and giving these kids and ALL kids your best.
John
Comments in 2020--
- I found this very hard to accept. This hardly seemed real that CHOI was denying surgery to Haitian Hearts patients who had already been operated at CHOI and needed repeat heart surgery. But this DID happen and these kids did suffer greatly.
- Finding other medical centers to operate Haitian kids who had already been operated in Peoria, was very difficult. The other medical centers thought that these kids were CHOI's responsibility...which they were.
WEDNESDAY, DECEMBER 28, 2005
Today the rising sun cast its pink tones on the rim of the sky at 6:10. We were up and ready to start our morning of negotiating the Haitian and U.S. government bureaucracies, a process that would be infinitely greased by the phone calls from Senator DeWine. Despite this, I didn’t sleep much last night, thanks to a congenital habit of worrying, with an assist from the water pump that rumbled loudly for 10 seconds of every minute.
As we waited for Pierre, the nice gentleman who was going to drive us on our rounds, I tried to pace away the anxiety. What was the worst thing that could happen? I mentally recited the mottos of Tom Rath, the protagonist in “The Man in the Gray Flannel Suit,” a novel I read on a prior trip: “It doesn’t really matter. Here goes nothing. It will be interesting to see what happens.” Tom developed these philosophies when he was a paratrooper, preparing to jump from planes during WWII. Later, he applied them to other tense situations in his life. Alas, while I admire their stoic detachment, these mantras are a little too post modern for me, plus I’m no good at dealing with bad outcomes.
At 6:45, Pierre pulled into the parking lot in his maroon Maxima, and we were on our way. We made a left on Toussaint L’Overture Blvd and went through the roundabout, wound our way through the hills of Martin Luther King, a road heavily patrolled by the Haitian National Police, and turned right onto John Brown, the street where the Haitian Immigration Office is located. People had begun to assemble for the day at the only place in all of Haiti where its citizens can get a passport. “See those guys standing on the sidewalk?” pointed John to a group of five young men standing in front of the building. He explained that they offer their services to applicants to expedite the process of getting a passport. For a fee, of course.
John had to carry Jackson through the bowels of the Immigration Building and up a couple of flights of stairs to the Monsieur Chavane, the Director of Haitian Immigrations. A sign posted on his door asked all to leave their guns outside the office. Director Chavane was expecting us. He talked briefly with John and looked at Jackson’s papers. He then directed an official to take us to a room down the hall, where Jackson was fingerprinted.
When we came out of this office, we saw a woman sitting on a bench, smiling at us and holding a little girl. “Bonjou,” she said. John recognized her immediately. The little girl has a heart defect and the mom had brought her to see John a couple of weeks ago. Seeing us at Haitian Immigrations with another sick Haitian, whom we were getting out of the country, caused the woman to dissolve into tears. John hugged her, and told her we would search for a hospital for her daughter.
As we sat down to wait back near the Director’s office, Pierre, clearly impressed by the attention and speedy action we were receiving whispered with wonder in his voice, “They wouldn’t do this for me.” Pierre works in an orphanage and has spent the last three months trying to get a U.S. visa for a 2-year-old who has a heart defect. She has been accepted by NYU, and the consulate has been giving him the complete runaround, saying that they must have the original letter from the hospital.
I wanted to try to convey to Pierre that the superlative service we were receiving today was due to the intervention of a Senator DeWine. He is in the parlance of Creole, un gran moun, a big man. But I thought that explanation might sound kind of lame: to Haitians all blancs are gran moun. So I didn’t say anything.
A few minutes later, Director Chavane came out of his office and handed John a manila folder. It contained Jackson’s passport, which had been extended for one year for humanitarian reasons. John hugged the director.
A group of men gathered around Jackson as John explained to them what was wrong with him. Why is his heart bad, the director wanted to know. Rheumatic fever, said John, very common in Haiti. John gestured over his shoulder to the woman with her three-year-old who had followed us into the Director’s waiting area. “That little girl has a heart problem too. I am searching for a hospital for this little girl.”
John and Pierre shook hands all around. John picked up Jackson and carried him down to the main level. After resting a few minutes, we got back into the car and headed the few blocks to the American consulate for Round Two. It was only 8:30.
I wrote this post from Cleveland.
Sunday, January 01, 2006
Jackson Update
Dear Everybody,
This is a summary of Jackson's last 48 hours. It is Thursday night now and we are in Cleveland at Cleveland Clinic.
At 6:30 AM on Tuesday, we went to downtown Port au Prince to Haitian Immigration and renewed Jackson's passport. It was to expire in May, 06.
We needed to carry Jackson down the street and in the building because he was too weak to walk more than a few steps on his own. The Haitian authorities were very gracious and extended his passport very quickly.
We met a mother and her baby who has congenital heart disease at Immigration. I had examined the baby in early December and she has Tetralogy of Fallot. Mother was attempting to get an urgent passport and when she saw us she broke out crying because she knew we were leaving with Jackson for the States and leaving her baby behind. (She knew she wouldn't have the baby's passport in time.) We told her we would be back for her baby on another trip, which didn't seem to console her too much.
After finishing at Haitian Immigration, the three of us headed for the American Consulate where they fingerprinted Jackson. After we filled out the visa application, the Consulate official could see how sick he was and granted him the visa in 30 minutes.
We then made it to the airport in Port au Prince by 1 PM but the plane was 1.5 hours late in departure. We arrived in Cleveland at midnight and Jackson was still hanging in there.
We stayed at a Ronald McDonald House just across the street from Cleveland Clinic and we took Jackson to the hospital yesterday morning where he was made a direct admit. Within 30 minutes of being admitted, Jackson had an IV started and a bedside echo was performed.
Today Jackson had a transesophageal echo and a right heart catheterization and he was moved to the heart failure ICU immediately afterward.
Jackson is doing well tonight. Results so far show that he has a very tight mitral valve (stenosis) and a tricuspid valve that is very insufficient--not appearing to close at all. He has a very low cardiac output bordering on cardiogenic shock largely due to the poor function of his heart valves. His left ventricle squeezes very well but his right heart does not because of the mitral stenosis and tricuspid regurgitation. His pulmonary artery pressure is high but could be much worse.
The plan is still surgery. The Cleveland Clinic docs are trying to "buff him up" some before surgery. They do not know how he is still alive with the numbers that were found today at his cath procedure.
Cleveland Clinic is the number one heart hospital in the United States. Jackson will be a challenge even for them with his long-standing disease. We will be very fortunate if he does well and we continue to need your prayers.
Everyone here has been great. There are 26,000 employees at the Cleveland Clinic with 2,300 doctors. There are over 30 buildings including the satellite clinics.
On Tuesday another Haitian Hearts patient, Emmanuel, is coming to Cleveland Clinic for his preop workup. (He is in Lima, Ohio right now.) He is 15 months old and weighs 10 lbs. Emmanuel has a ventricular septal defect, which is the most common congenital heart defect.
We spoke with the doctor who is in charge of the Pediatric Cardiac Surgery department here today (Dr. Duncan), and thanked him for accepting Emmanuel and two other Haitian babies later this month. There is a great book out in the last couple of years about pediatric heart surgery called "Walk on Water", based on the Cleveland Clinic Pediatric Cardiovascular program.
We will keep you informed about how these kids do.
Sincerely,
John and Maria
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THURSDAY, JANUARY 05, 2006
Jackson has been at The Cleveland Clinic for more than a week. The contrast between this marvel of this medical, technological and architectural facility and anything in Haiti except maybe the Hotel Montana can hardly be overstated. The International Center is located in a beautiful hotel adjacent to The Clinic. The polished granite floors Jackson stared down at, the fancy rolls and fruit we were offered during the check in process, and the personal attendant assigned to us bespeak the amount of money that flows into The Clinic from paying international patients. As one of the charity patients, though, Jackson is receiving the same attention.
The conscientious, excellent attention continues once Jackson is admitted to the hospital. He is has been on three different floors, and is currently on a step down unit while he awaits surgery. He has had numerous pre-op procedures including two echocardiograms, cardiac cath, and multiple blood tests and medicine regimens. All of the testing and medical procedures are to get Jackson as strong as possible for surgery and then to give the surgeon as much knowledge as possible about Jackson’s heart so that surgery goes as smoothly as possible.
Elaine, a physician’s assistant with the cardiac surgeons, met with us last night to go over the plan for Jackson. His surgery is tentatively scheduled for Monday. Like almost all of the medical personnel who have seen Jackson, she can hardly believe the condition of his heart. “The surgeon is Croatian and he knows Jackson doesn’t really have a chance without surgery. We want to give him as good a chance as possible,” said Elaine. “We want to provide him a family here while he is at Cleveland Clinic and surround him with as much love as possible,” she continues. “I have two prayer groups praying for him.”
As John fills Elaine in on some of Jackson’s history, her eyes tear up. People at The Clinic are very touched by Jackson. He is quiet and undemanding, very sick but uncomplaining. Today when John was in the echo lab, the technicians pulled up Jackson’s echo. They didn’t think the state of his heart was really compatible with life. Yet Jackson lives on.
None of us is unaware of the huge risks that Jackson faces going into the operating room. One of the big challenges will be getting his heart re-started after his valves are repaired and it’s time to take him off the bypass machine. But he can’t continue to live like he has been.
We are impressed with the medical skill of the people at The Cleveland Clinic. But we are equally impressed by the personal care they are showing to Jackson. It was so different in Port-au-Prince where he was a sick person whom people passed by and for whom there was really nothing that could be done. On the white board above one of Jackson’s beds was written his name, as he had never been called before: Mr. Jean-Baptiste.
Sunday, January 15, 2006
Peoria Journal Star Forum
Dr. John Carroll (Dec. 21 Forum, "Haitian needing new heart valve not getting help here") is again trying to lay a guilt trip on OSF and the Peoria area.
I am sorry his patient has acute congestive heart failure. I applaud OSF for its cooperation six years ago, even though I am sure a portion of my OSF bills went to this program.
But why do these cases take priority over the needs of people in the Peoria area? Why do these cases take priority over the ongoing medical and family support needs of injured solders?
Many people in New Orleans died in their wheelchairs with no medical assistance. Why do our citizens in need rate so low on his priority list?
I suspect the reason is that it is tough, dirty work and that the low visibility does not satisfy Carroll's ego. Flying air ambulances around the world to transport critically ill patients to Peoria is an exciting, high-visibility business, but the benefit per dollar spent is extremely low.
If Dr. Carroll is convinced his program must go on, then he should fund it himself and set up a clinic in Haiti.
Paul Cobb
Germantown Hills
SUNDAY, JANUARY 08, 2006
We’re starting to know our way around Cleveland Clinic, or at least the departments we need to go to. The main campus of the clinic is comprised of 37 buildings, many connected by skywalks. We cross the Euclid Street to the closest building and follow the walks to building G, home of the Heart and Vascular Institute where Jackson has a room on the 9th floor. Emmanual is in the Children’s Hospital in Building M. Soothing classical music plays in the public areas of the hospital. Pictures and art work line the walls. The floors are beautiful and shiny. Glassed in waiting areas at the end of many hallways allow people to watch the clinic construction under progress.
For the past 11 years, Cleveland Clinic has been ranked the number one heart hospital in the United States. This reputation attracts people from all over the world. One of the employees at the swanky Inter-Continental Hotel told us that a few months ago, the Amir of Kuwait came to the Clinic for medical care. He and his entourage took over three floors of the hotel.
The people at the Clinic seem to really like their jobs and be invested in the patients. One of the nurses, whom we bumped into last night, wants to take Emmanual home. Thankfully, he has a wonderful host family and an adoptive family from Washington State who is visiting him in Cleveland. George, one of Jackson’s nurses, tells us how much he likes Jackson and how he’d like to keep in touch with him after his surgery. Yesterday, I paged the Catholic priest on call to ask him to stop by the room of the young Haitian man and offer him sacraments. “You mean Jackson?” said Father Bill. “I’ve already been to see him several times. He’s a wonderful young man.” Almost everyone at the Clinic seems to be touched by either Jackson or Emmanual.
We’re staying at the Ronald McDonald House, a lovely 37-room facility built in 1994, across the street from the Cleveland Clinic. Families from all over the world, country, and Ohio stay here while their children are receiving medical care. One family has been here for two years. Besides the bedrooms, which are like hotel rooms, the Ronald McDonald House has a large kitchen, play room, computer room, library, television room, and sitting area. The facility is largely run by volunteers. Everyone is cheerful and helpful. Many groups from around the community bring in meals. We are responsible for cleaning our rooms and laundering our sheets and towels. They give us room keys to wear around our necks, which make us feel very official. I will now be more inclined to drop spare change in the clear containers at McDonalds, where they collect money for these houses.
Our main conduit to the rest of Cleveland is Mary Hurley. For the past 11 years or so, Mary has spent half of the year in Haiti, which is where John met her. Mary works at a home for the dying run by the Missionaries of Charity. She found a host family for Jackson, whom we met last night. They stopped by the hospital today and we introduced them to Jackson. Earlier in the week, Mary took us to Little Italy, not too far away, to Mama Santa’s for some of the best pizza we’ve ever had. We’re returning to the neighborhood this evening to attend Mass at Holy Rosary.
Jackson Jean-Baptiste will have surgery on Tuesday, January 10. John talked with the doctor a couple of days ago, and five times this very skilled surgeon, who was chief resident of both general and cardiac surgery at The Brigham, Harvard Medical School, referred to Jackson’s surgery as high risk. His heart, lungs, and liver all must be able to handle the assault of surgery, the bypass machine, and the new St. Jude’s valve, which will replace his trashed and tight mitral valve. But all realize, especially Jackson, that there’s an even greater risk if he doesn’t have the surgery. “It is in God’s hands,” we frequently say.
We continue to be impressed by the care that both Emmanual and Jackson are receiving. One of the nurses at the hospital wants to take Emmanual home. He will be leaving the hospital to stay with a wonderful host family, who were trained in n-g tube feedings this morning. Emmanual has had a couple of blood transfusions. His hemoglobin has doubled and he has put on a half a pound since he’s been in the hospital. He complains now when we take away his pretzel stick and his skin is much darker. These are both good signs. He will probably have surgery in about a month. Everyone comments on Emmanual’s eyes. The infectious diseases doctor said, “When you look in Emmanual’s eyes, you see all of humanity.”
MONDAY, JANUARY 09, 2006
“I Will Wait For You.”
Along with, “Don’t forget about me” (see previous post), “I will wait for you,” could serve as Haiti’s national motto. We hear it frequently when we are leaving the country or when we have told a family we are searching for a hospital. They mean it too: they will wait.
Today, we are the ones waiting. Jackson’s surgery has been postponed until later in the week. The doctors are concerned about his liver function, though except for his elevated bilirubin (bile) levels, everything with this forgiving organ seems to be improving. The liver is making clotting factors, which is a good thing as when Jackson goes under the knife, his blood will need to clot. Because of all the diuretics, swelling all over his body, including his liver has decreased, and he feels much better.
It was hard to tell him this morning that he won’t be having surgery on Tuesday. Having lived with the pain of his dysfunctioning body for months now, he more than anyone is anxious for surgery. “Why aren’t they going to operate?” he asked. “They want you to be as strong as you can,” we reply. I don’t think this makes much sense to Jackson as he now feels as good as he has in awhile, and he knows he needs surgery to feel really good.
Walking down the skywalk to get a bite to eat, I bump into Jackson’s surgeon. We haven’t met, but I recognize his picture from the Cleveland Clinic website. This accomplished surgeon is shockingly young. He says that he doesn’t think the surgery will be on Tuesday, but later in the week after any additional liver problems have been ruled out. “We want him to be as strong as he can,” he reiterates. I tell him we have seen Jackson this morning, and his swelling is reduced. I tell him Jackson will do fine. The surgeon seems happy to hear about the swelling reduction. I thank him for the care he is giving Jackson. He says he is happy to do it. As he walks away he says, “I will take care of Jean-Baptiste.
So Jackson will wait for his surgeon. Haitians are used to waiting: they’re waiting for elections, waiting for a decent government, waiting to get to America, waiting to see a doctor. Waiting. Waiting. Waiting. They are used to it, but I think the kind of waiting Jackson’s doing is a cruel though necessary kind. He's been in a hospital bed for almost two weeks, staring at the cold snow he hates falling on a gray Cleveland. He's having a good day today--his nurse George is going to take him on a field trip to the gift shop-- but the bad days aren't lurking far away in memory or reality. So, like the old Tom Petty songs says, “The waiting is the hardest part.” At least it's better to wait in Ohio than Port-au-Prince.
Along with, “Don’t forget about me” (see previous post), “I will wait for you,” could serve as Haiti’s national motto. We hear it frequently when we are leaving the country or when we have told a family we are searching for a hospital. They mean it too: they will wait.
Today, we are the ones waiting. Jackson’s surgery has been postponed until later in the week. The doctors are concerned about his liver function, though except for his elevated bilirubin (bile) levels, everything with this forgiving organ seems to be improving. The liver is making clotting factors, which is a good thing as when Jackson goes under the knife, his blood will need to clot. Because of all the diuretics, swelling all over his body, including his liver has decreased, and he feels much better.
It was hard to tell him this morning that he won’t be having surgery on Tuesday. Having lived with the pain of his dysfunctioning body for months now, he more than anyone is anxious for surgery. “Why aren’t they going to operate?” he asked. “They want you to be as strong as you can,” we reply. I don’t think this makes much sense to Jackson as he now feels as good as he has in awhile, and he knows he needs surgery to feel really good.
Walking down the skywalk to get a bite to eat, I bump into Jackson’s surgeon. We haven’t met, but I recognize his picture from the Cleveland Clinic website. This accomplished surgeon is shockingly young. He says that he doesn’t think the surgery will be on Tuesday, but later in the week after any additional liver problems have been ruled out. “We want him to be as strong as he can,” he reiterates. I tell him we have seen Jackson this morning, and his swelling is reduced. I tell him Jackson will do fine. The surgeon seems happy to hear about the swelling reduction. I thank him for the care he is giving Jackson. He says he is happy to do it. As he walks away he says, “I will take care of Jean-Baptiste.
So Jackson will wait for his surgeon. Haitians are used to waiting: they’re waiting for elections, waiting for a decent government, waiting to get to America, waiting to see a doctor. Waiting. Waiting. Waiting. They are used to it, but I think the kind of waiting Jackson’s doing is a cruel though necessary kind. He's been in a hospital bed for almost two weeks, staring at the cold snow he hates falling on a gray Cleveland. He's having a good day today--his nurse George is going to take him on a field trip to the gift shop-- but the bad days aren't lurking far away in memory or reality. So, like the old Tom Petty songs says, “The waiting is the hardest part.” At least it's better to wait in Ohio than Port-au-Prince.
MONDAY, JANUARY 16, 2006
Christmas in January:
We finally celebrated Christmas with our families this past weekend. My good mom kept up the tree until we got back to Peoria. After the huge buildup to the big day, Christmas must seem far in the past to most, though the season only ends on January 6, with the feast of Epiphany.
Here are some memories of our Haitian Christmas: A couple of weeks before the much anticipated day, my six-year-old niece asked me if Santa Claus brings presents to the children of Haiti. I had to swallow hard and then wimped out on telling her that Papa Noel, as the chubby man in red is called, bypasses most of the country. We’d asked Jackson if he had ever received a present on Christmas. He said no.
Speaking of Jackson, he is starting his fourth week at Cleveland Clinic, where the doctors and nurses continue to fine tune him for surgery. Jackson, like many Haitian patients, surprises us with his will to live, especially given the abuse his heart has taken. Now, it’s a question of balancing his fluids and electrolytes so his kidneys, liver, and heart function as optimally as possible. Jackson looks slight and meek, but he is a tough, tough guy. He has had quite a few visitors from the Peoria area.
On Christmas Day, we walked the mile to 9 am Mass at the Missionaries of Charity. As we hiked up the hill to Delmas 31, we were greeted by a distinctly un-Christmaslike sight: we noticed a commotion to our left and saw a young police officer slamming a man between the shoulder blades with a night stick, while yelling “Fe bak! or “Go back!” He hit the poor man so hard, that the on the fourth or fifth blow, the stick broke. The policeman stood there in surprise, holding a small jagged piece of wood. The man continued walking during this attack as if he was being hit with a Nerf bat. He was kind of singing out as he walked. We think he probably had some kind of a mental problem. Nothing this man was doing or did, justified the beating. Weak people in Haiti are often preyed upon and treated with little compassion. This attack seemed to be pure sport. After the stick broke, the police made no attempt to arrest the man.
We did make it to Mass, where the choir sang loudly and often during the two and a half hour celebration. One of the songs was to the tune of the Battle Hymn of the Republic, with the words, “Glory, glory alleluia,” sang in English.
In a country lacking necessities, we aren’t surprised to find the material manifestations of Christmas absent. In other situations, I have heard people say, “You can’t miss what you’ve never had.” I don’t know about this. I asked John if the employees where we stay feel fortunate compared to the abysmally poor people in Haiti. “Oh yeah, they do,” he responded. “The people in Cité Soleil, they live like animals, and they know it. You know, the lady three hovels down, she has a black and white TV that works once in awhile, when there’s electricity, and they gather round and watch some Dominican soap opera. They know there’s another kind of life out there, and they know it’s not going to be happening anytime soon for them.”
Wouldn’t it be nice if the spirit of Christmas was a year round thing?
We finally celebrated Christmas with our families this past weekend. My good mom kept up the tree until we got back to Peoria. After the huge buildup to the big day, Christmas must seem far in the past to most, though the season only ends on January 6, with the feast of Epiphany.
Here are some memories of our Haitian Christmas: A couple of weeks before the much anticipated day, my six-year-old niece asked me if Santa Claus brings presents to the children of Haiti. I had to swallow hard and then wimped out on telling her that Papa Noel, as the chubby man in red is called, bypasses most of the country. We’d asked Jackson if he had ever received a present on Christmas. He said no.
Speaking of Jackson, he is starting his fourth week at Cleveland Clinic, where the doctors and nurses continue to fine tune him for surgery. Jackson, like many Haitian patients, surprises us with his will to live, especially given the abuse his heart has taken. Now, it’s a question of balancing his fluids and electrolytes so his kidneys, liver, and heart function as optimally as possible. Jackson looks slight and meek, but he is a tough, tough guy. He has had quite a few visitors from the Peoria area.
On Christmas Day, we walked the mile to 9 am Mass at the Missionaries of Charity. As we hiked up the hill to Delmas 31, we were greeted by a distinctly un-Christmaslike sight: we noticed a commotion to our left and saw a young police officer slamming a man between the shoulder blades with a night stick, while yelling “Fe bak! or “Go back!” He hit the poor man so hard, that the on the fourth or fifth blow, the stick broke. The policeman stood there in surprise, holding a small jagged piece of wood. The man continued walking during this attack as if he was being hit with a Nerf bat. He was kind of singing out as he walked. We think he probably had some kind of a mental problem. Nothing this man was doing or did, justified the beating. Weak people in Haiti are often preyed upon and treated with little compassion. This attack seemed to be pure sport. After the stick broke, the police made no attempt to arrest the man.
We did make it to Mass, where the choir sang loudly and often during the two and a half hour celebration. One of the songs was to the tune of the Battle Hymn of the Republic, with the words, “Glory, glory alleluia,” sang in English.
In a country lacking necessities, we aren’t surprised to find the material manifestations of Christmas absent. In other situations, I have heard people say, “You can’t miss what you’ve never had.” I don’t know about this. I asked John if the employees where we stay feel fortunate compared to the abysmally poor people in Haiti. “Oh yeah, they do,” he responded. “The people in Cité Soleil, they live like animals, and they know it. You know, the lady three hovels down, she has a black and white TV that works once in awhile, when there’s electricity, and they gather round and watch some Dominican soap opera. They know there’s another kind of life out there, and they know it’s not going to be happening anytime soon for them.”
Wouldn’t it be nice if the spirit of Christmas was a year round thing?
Tuesday, January 17, 2006
Washing Jean-Baptiste's Feet
Dear Bishop Jenky, Sister Judith Ann, Joe, Gerry, Keith, Paul, and Doug
Marshall,
As you may know, Jean-Baptiste is a patient at Cleveland Clinic. I never
received a meaningful response from any of you regarding helping Jean-
Baptiste when I mailed you repeatedly asking for your help since the
spring of 2005. Many people from Peoria have driven the 8 hours to
Cleveland to visit Jean-Baptiste. They are very sad to see him in the
condition he is in and feel bad that OSF would not accept him or even
answer their emails regarding Jean-Baptiste.
A couple of days ago, my niece and I watched a nurse's aide wash Jean-
Baptiste's feet. He sat in a chair at the bedside as she carefully and gently
washed his feet and toes and put cream on them. For most of his life he didn't
even have shoes. She commented on how nice his feet were. She doesn't wash many 21-year old's feet because she cares for Americans who are much older with this degree of heart failure due to valve dysfunction.
Jean-Baptiste's illiterate mother who lives in a cinder block house
without water or electricity on a mountainside overlooking Port-au-
Prince, has lost three males in her family, including her husband and is about ready to lose the fourth. We have no way to contact her about her son's status.
A physician from Doctors Without Borders recently wrote that silence
breeds injustice. I would respectfully advise all of you to travel to
Cleveland with one of the former host families when they visit Jean-
Baptiste and explain to them and to Jean-Baptiste your motivation for your silence and abandonment of him. Wash his feet, like the nurse's aide did, and tell him you are sorry.
Sincerely,
John Carroll
These were comments to this post by a nurse's aide who worked at Cleveland Clinic (lightly edited by me)--
Anonymous
Dear Dr. Carroll,
I spent most of my time in room four, taking care of Jackson. He was so smart, and so kind! But he was so very weak, too.
Reading this, I wonder if it was me, the nurses's aide, because I bathed him frequently, and I still to this day remember that moment (when she washed Jackson's feet.)
I will NEVER forget him. I am haunted by his tired voice, when one day towards the end of my week he asked me, "Why didn't you brush my teeth?" I did not realize that he no longer had the strength to do it himself. So I got out the toothpaste and brush, and I spoke to him gently as I brushed his beautiful teeth.
I will always remember how he'd sit up and listen to his CD walkman and read when he had the strength.
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SATURDAY, JANUARY 21, 2006
Jackson Jean-Baptiste: August 1, 1984-January 21, 2006
Things don’t always turn out the way we hoped for, worked for, prayed for, wanted. Isn’t that one of the hard lessons of life? Jackson died this morning. As one of his doctors said, “It is heartbreaking.” For so many reasons.
Independent of his severe heart problem, Jackson had a hard life. His father was murdered, his mother lost two other sons, one as an infant and the other as a young adult to sickle cell. And yet Jackson received blessings too. In 2002, he came to the United States and had his health temporarily restored. He knew he was loved by his own family—his mother and sister carried him to us on December 1—and his American families. These people hosted him in their home, where he became part of the family, sent letters and money to Jackson, visited him here in Cleveland, prayed for him.
Perhaps it was all the love, in the face of cruel poverty, that gave Jackson such a strong will to live. I believe he kept himself alive until John arrived in Haiti, kept going and even improved during the four weeks he was with us in Haiti, and until a day ago was able to tolerate all the testing and waiting involved in preparing for major heart surgery, all with a heart, that an echo technician in Cleveland said, “does not appear compatible with life.”
The last two days of Jackson’s life, his health significantly deteriorated. Prior to this, it had been a struggle to control the volume of fluid in his body: too much fluid, and his liver became impaired. Too little, and his kidneys didn’t get the blood they needed to function. Balance is so important to health; this last imbalance required Jackson to go on dialysis and back to intensive care, where after a final interventional procedure, he died. While he was awaiting this procedure, four nurses from another floor where Jackson had been came down to visit him, a gesture typical of the caring shown by the Cleveland Clinic employees.
Many times while at the Clinic, Jackson’s experience and suffering reminded us of Jesus Christ. Our niece Jennifer and John saw Jackson get his feet washed by an aide. As she gently rubbed lotion over his heels and toes, she told him how nice his feet were, feet that for much of his life in Haiti didn’t have the benefit of shoes. Yesterday, John held wetted gauze to Jackson’s parched mouth and lips to give him a little moisture. After the last procedure, we sat in a waiting area and through a screened window, watched the silhouette of Jackson on a stretcher, attached to several machines, be wheeled slowly, almost reverently, down a hallway, accompanied by the interventional team. “It looks like a processional,” said our friend Mary who waited with us.
The hospital will do an autopsy, which will likely pinpoint the cause of death. But we don’t really need an autopsy to know why Jackson died. He died because of poverty. When he was ten, he got strep throat but not the few pennies worth of antibiotics needed to treat it. The people of Haiti lack so much: sanitation, clean water, food, education, money, a health care delivery system. There are few places to go to get medicine and little money to buy it. So, Jackson’s strep developed into rheumatic fever, and it ravaged his heart valves.
We live in a world with billions of poor people like Jackson. Therefore, I submit to you that we live in a world constructed in a fundamentally unfair way, which results in a few of us having way too much and others having far too little. For those of us in the too much camp, we should feel profound unease, not just for its own sake, but to spur us to action. Today I don’t have political/economic reform to suggest, though I think this has to happen. Today I’ll suggest personal reforms: that people like Jackson somehow have to be more of a priority in our lives and that we need to examine ourselves for ways in which we perpetuate the injustice. Change can be difficult and uncomfortable, but here’s the carrot: in making the world a better place, we can make our own lives better, too.
For today, we are sad and questioning. Given the somewhat miraculous events that occurred to get Jackson to Cleveland Clinic, it is hard to accept that he died. Perhaps we Americans are the ultimate “happy ending” people. We don’t like death. It’s the ultimate defeat.
Dr. Paul Farmer, a doctor who works in Haiti and other poor countries, has coined a phrase “fighting the long defeat.” When you ally yourself with the poor, he explains, you’re allying yourselves with the world’s losers and you can expect many defeats. You get a victory now and then, but overall, it’s mainly defeat. However, being with the poor, helping them, is the right thing to do, and so you fight the long defeat. The flipside of this philosophy is contained in a line from King King, which Jennifer and I saw the other day: Defeat is only momentary. I think defeat is somehow both long and momentary. Jackson's life, ending at age of 21, can be viewed as a long defeat, and in many ways it was. But there were transcendent moments of victory, too.
Though Jackson died, we are thankful that he was given some hope and that he knew how much people loved him. He had the opportunity to receive good medical care. We learned much from him—how precious life is and how to persevere in seemingly impossible circumstances. We will follow Jackson's example: we won't give up.
Jackson always comported himself with dignity. He wanted to be able to attend to his own needs, and it was difficult for him when he could not. His quiet strength and his determination to do the best and the most that he could each moment were humbling.
We love him and we miss him.
Friday, January 27, 2006
Jackson Dies
On January 21, 2006, Jackson was pronounced dead at Cleveland Clinic. Maria and I were at his bedside in intensive care when he died.
Jackson had struggled even more during the last few days of his life and a heroic procedure was attempted by the interventional cardiologist to bypass his sick mitral valve. His heart just didn't respond to this intervention.
Jackson touched a lot of people's lives at Cleveland Clinic. Many nurses came to visit him during his hospitalization when he would transfer from one floor to another. And his wonderful host family from the Peoria area drove to Ohio to see him and be with him.
Jackson's past and present illnesses and his death were all preventable. We all needed to try harder for Jackson.
------
Friday, January 27, 2006
Jackson Jean-Baptiste's Autopsy
Date: 24 Jan 2006 22:17:21
Dear Bishop Jenky, Sister Judith Ann, Keith, Paul, Gerry, Joe, and Doug Marshall,
We were present on Friday morning when Jean-Baptiste died just a few minutes after midnight. His death was slow and painful over the last several months. However, the last few days were his worst, and his screams would bring him out of his low-flow slumber.
I will spare you further details of his last several hours understanding why none of you would have wanted to witness it. If Jean-Baptiste would just have slipped away silently in his cinder block house in the mountains of Haiti as designed, it would have been much easier on all of us.
I was able to participate in Jean-Baptiste's autopsy yesterday morning. As I entered the pathology room, I saw his body lying on the second silver stainless steel table. There were various obnoxious appearing tubes and catheters protruding from it. They were all clogged, cold, and useless as was the body from which they came. However, the pathologist and technician treated Jean-Baptiste with more sensitivity and care than he had received during most of his 21 years of life in Haiti.
They carefully and meticulously removed his heart, lungs, liver, and brain.
Jean-Baptiste's heart was enlarged and muscular due to all the extra work it had to do to keep him alive since a "disease of antiquity", rheumatic fever, had destroyed his valves a decade ago. A white fibrous scar tissue was abundant and stuck on the front side of his heart due to his previous surgery and the inflammation that the merciless rheumatic fever rendered.
I introduced my left index finger into the superior vein leading into his heart (the superior vena cava) which immediately entered a vacuous right atrium. With little effort, my finger slipped through his incompetent tricuspid valve into his massive right ventricle. Using my right index finger and thumb to palpate heart muscle, the left ventricle felt thick and very strong.
An incision was then made through the left atrium of the heart which allowed us to stare down at his rock-hard mitral valve. All three leaflets were calcified and immobile when tapped with a scissors. This valve was the anatomic culprit behind Jean-Baptiste's suffering. It would not let his blood flow to where it wanted but reversed it and flooded his congested and blue lungs and liver. The doctors in Peoria had seen this problem last spring and wanted to fix it. But unfortunately, you didn't give them and Jean-Baptiste the chance.
Jean-Baptiste's perfect brain weighed 1,150 grams. I guess his brain bothered me the most because it was indeed perfect. This beautiful gray organ had guided him his entire life and had no blood clots, was not atrophied, and had no tangles or plaques confusing his thinking. As I looked at it, I wondered which part controlled Jean-Baptiste's will to live, his independence, and his ability to speak three languages. Which lobe allowed him to forgive? I knew that he wouldn't tell me now, even if he could, how he rationalized his deplorable life, which was devoid of dignity which should be "usual and customary" for human beings.
The official autopsy report won't be out for five weeks. The attending pathologist is excellent; however, his report will most likely be incomplete. Causes of death probably won't include poverty without dignity and abandonment.
As the first part of the autopsy concluded, I felt very guilty as I looked at the remains of Jean-Baptiste. To have sent him back to Haiti a few years ago after his surgery was my mistake. To have believed in you and trusted was a serious miscalculation on my part which helped to shorten the life of our young friend. I did not anticipate and would not have believed your silence as this innocent pleaded for your help.
Jean-Baptiste's death explicitly reveals the ugly underside to the corporate Catholic "health care system", formerly known as Catholic hospitals. Multiple biblical passages mentioning the poor, a large litany of Catholic social justice teachings, and the OSF mission statements all supported helping Jean-Baptiste when he needed it. He certainly didn't need an attorney to advocate for him. His defense had been written years ago.
Unfortunately, you all failed him as you ignored the central teachings of the faith. A few more years of soccer games and Dairy Queens wouldn't have hurt Jean-Baptiste and definitely would have helped all of us.
I was finally able to talk with Jackson's Haitian family up on the mountain yesterday. His 18-year-old sister Nadia cheerfully answered the phone. She had brought Jean-Baptiste mangoes in Haiti during his sickest days in December, while many people frantically searched for a medical center to accept him in the United States.
I told her Jean-Baptiste died and heard her shriek uncontrollably as the line went dead.
John Carroll, MD.
Posted by John A. Carroll at 2:42 PM
----
Jackson's Obituary
Peoria Journal Star
January 25, 2006
Tuesday, January 24, 2006 5:01 Goodfield - Jackson Jean - Baptiste, 21 years old, from La Boul, Haiti, formerly living with host parents in Goodfield, died at 12:30 AM on January 21, 2006, in Cleveland, Ohio.
He was born on August 1, 1984, in Petion-Ville, Haiti to Maxil and Rosette Jean-Baptiste. He is survived by his mother, Rosette, and one sister, Nadia in Haiti. His father and 2 brothers preceded him in death.
A funeral mass will be held at 10:00 am on Friday, January 17, 2006, at St. Joseph Catholic Church, formerly St. Martin de Porres Catholic Church, in Peoria. Visitation will be held from 6-8 pm on Thursday at Argo-Ruestman-Harris Funeral Home in Eureka. A graveside service will be held at 10 am on Saturday at the Goodfield-Congerville Apostolic Christian Cemetery in Congerville.
Jackson attended school in Haiti for 9 years that was interrupted frequently by heart problems caused by rheumatic heart disease. He was brought to the United States by Haitian Hearts in 2001 for heart surgery in Peoria. In May 2005 Jackson was diagnosed with a recurrent heart problem and brought to Cleveland Clinic on December 27 where he was treated.
During his stay in central Illinois, he stayed with loving host families in the area and attended school at Eureka Middle School. Jackson was very intelligent and spoke French, English, and his native Haitian Creole. During the last six months of his life, Jackson suffered tremendously due to his heart problems. He was a victim of poverty and greed that sustains and propagates the degrading conditions in which he and his family lived in Haiti. Jackson was very independent and strong and fought to keep himself alive and deserved much more dignity as a human being than he was given. Jackson's mother has now lost her main source of strength.
He will greatly be missed by his Haitian family and his host families in Illinois.
Online condolence will be received at ruestmanharrisfuneralhome.com and will be forwarded to Jackson's mother in Haiti.
Donations can be made to Rosette, his mother, through Haitian Hearts PO Box 2363 East Peoria, IL 61611.
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Children’s Hospital of Illinois Advisory Board
January 2006
Dear CHOI Advisory Board,
I am sure you are aware of Jackson Jean-Baptiste’s death. He was a Haitian Hearts patient and OSF-CHOI patient. OSF refused to accept him for care when his life was on the line. His death was preventable if we as a community cared enough.
In the past 125 years, when would the OSF Sisters Mission Statements and the Catholic Bishops Ethical and Religious Directives have been so ignored? If Jackson would have been your son, I believe all of you would have strongly advocated for his life. If you agree with how OSF responded to Jackson’s needs, please let me know.
Peoria has the talent and technology to be a great medical center in the Midwest if it only had the “heart”. The corporate greed and medical center arrogance within the city and lack of collaboration between the hospitals puts Peorians at risk in many ways. Jackson Jean-Baptiste suffered immensely and he and his mother never understood why he couldn’t return to Peoria for the care he needed and deserved, even with substantial money being offered to OSF. He was gravely ill and would look at my wife and I with a startled look when he knew he couldn’t return to his host family and went to his grave with no explanation.
There are more young Haitian Hearts patients that need to return to OSF to be cared for. What advice do you have so their outcomes are different than Jackson’s? Their families in Haiti and host families in central Illinois are now quite anxious for obvious reasons.
Please advise me how to prevent this obscenity from happening again at a medical center that “never turns anyone away”.
John Carroll
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Maria posted the following January 2006--
Jackson Shouldn’t Have Died
There’s not much that’s more depressing than arranging for a 21-year-old’s funeral. Except maybe calling his mother to tell her he died. Sigh. Even though I fervently believe in heaven, and know Jackson’s there, it’s not comforting me much because he went too soon. I remain stuck in the feeling that Jackson should not have died, that it was wrong, wrong, wrong and that it wouldn’t have happened, in my opinion, if OSF St. Francis Medical Center had accepted him, their former patient, back in May when John asked them to.
At Jackson’s visitation, an OSF employee came up to us in tears. The employee wanted to know if Sister Judith Anne Duvall, the president of OSF had received our e-mails pleading for Jackson’s life. Yes, John sent her these e-mails; most of them were directed to her. At this the employee started crying even harder. The employee stated said that they had heard a talk Sister Judith Ann had given this past Christmas season in which she emphatically stated that OSF would never turn away a child! “She lied,” the employee kept repeating.
This is what is so upsetting about OSF’s behavior: in my opinion, they are world class hypocrites. They will make pronouncement about not turning away a child, while they are doing that exact thing. This non-profit institution hides behind Catholic words and posturing while they act like the most cutthroat, capitalistic organization in town. From closing the mental health unit, to asking sick people how much their homes are worth, to dangerously monopolizing paramedic and ambulance service in Peoria, they behave like the most greedy, for-profit organization around. And they try to have it both ways, pretending to be a non-profit, good Catholic organization, while violating Catholic social teaching left and right.
My husband John and I have had many discussions about what to do re: OSF. He’s of the opinion that we need to continue to expose their misdeeds so that people know what’s going on. I actually think he’s done a good job of this, especially given that criticizing OSF, the second largest employer in town, tends to paralyze people—editors, elected officials, employees, average citizens—with fear. But I don’t know if we’ve ever lived in more apathetic times. We know of people who have lost loved ones due to the incompetence of AMT, the ambulance company that is co-owned by the three Peoria hospitals and that has a monopoly on paramedic and ambulance care in Peoria, and they won’t be publicly critical of AMT or OSF because they are afraid of repercussions. If this is the case, people sure aren’t going to go to bat for some sick Haitian kid, right Mr. Cobb?
John wants to keep fighting OSF in the hopes that people will wake up, join the fight and change will ensue. I view OSF as a black hole that sucks the energy and life out of anyone (except John) who tries to oppose it. In much the same way that we deserve President Bush, perhaps we deserve what we’re getting in central Illinois. In my opinion, we tolerate OSF’s bad behavior and permit it to continue. One day, the chickens will come home to roost.
As for now, we’ll mourn Jackson and continue to work in Haiti and get the occasional kid out for medical care.
The following eulogy was delivered at the end of the funeral Mass for Jackson Jean-Baptiste, which was held at St. Martin de Porres Catholic Church, the oldest Catholic church in Peoria, named after the first black saint from the Americas. Across the street from the church is a statue of another Haitian Jean-Baptiste, Jean-Baptiste du Sable, the founder of Chicago and former resident of Peoria.
How does it come to be that a young man who was born and spent most of his life in Haiti has a funeral in Peoria Illinois? Through the grace of God, we were able to know and love Jackson Jean-Baptiste.
Jackson was born 21 years ago near Port-au-Prince to Maxil and Rosette. His father was killed when Jackson was 9 and two of his brothers have also died. He has one younger sister, Nadia.
When Jackson was a teenager, he was suffering from heart disease due to rheumatic fever. Some friends brought him to John Carroll, who arranged for him to have heart surgery in Peoria. During his time in central Illinois, Jackson befriended many people. He lived with the Mike & Susie Zobrist in Goodfield, and he attended Eureka Middle school. After Jackson returned to Haiti, he continued to keep in touch with his friends. John would bring him medicine to Haiti and continued to examine him.
This past May, it became apparent that Jackson was sick again. We brought him medicine in September. In December, Jackson had become so weak that his mother and sister carried him to us from their home, two hours and four tap tap rides away. Jackson stayed with us for the next four weeks. You learn a lot about a person living in a small room with them for 28 days. Here is what we learned:
Even in the face of his suffering—it was hard for Jackson to eat, sleep, and walk—he wanted to live. Poor Haitians, even those who are healthy, have very difficult lives. Jackson’s sister spends 13 hours twice a week walking for and carrying the water the family needs. His mother travels many hours on bad roads to buy second hand clothes which she sells near her home. Despite the difficulties of Jackson’s life, he had a strong drive to live—God made life good. His faith and hope played a big role in keeping himself alive as we searched for a hospital to accept him.
Jackson loved his family and friends in central Illinois. His mom and his sister visited him as often as they could each week. He was concerned about their safety and asked them not to come to the airport, where it was dangerous, to see him off. They said their good byes the day before. He spent hours looking at a small album of photographs of his time here. He was very hopeful that people at home were trying to find help for him.
Jackson conducted himself with such dignity. He never complained. He always spoke English to us, one of three languages he knew. He kept himself and the room very neat. He was thoughtful. When he heard us talking about Barbancourt Rum, he told us his home was not far from where the rum was made. Would we like some rum? he asked. The next day when we returned from the clinic, there were two bottles of rum in the refrigerator.
Jackson had some bad days during the time he was with us. But he had some good days too. We won’t forget the evening, shortly before we left, that we sat by the pool. As we dangled our feet in the water, Jackson told us about his life. People where we stayed grew attached to Jackson.
We were overjoyed when through a series of miraculous events, Jackson was accepted by Cleveland Clinic on December 23. The next few days were a flurry of activity. We got his passport extended bought plane tickets, and obtained a precious U.S. visa. Jackson was happy but weak; John had to carry him through the buildings.
Jackson was at Cleveland Clinic from December 28 through January 21 when he died. As the doctors tried to get Jackson ready for surgery, he waited. But it was hard. His suffering continued in Cleveland.
Suffering is one of the themes that runs through Jackson’s life, most obviously in his last few months. It is often hard to make sense of suffering, especially in those who seem to have an unfair share. We know it exists. We know God calls us to try and relieve suffering in others. But still it comes. Jackson’s suffering often reminded us of the suffering of Jesus. Jesus suffered for us. Perhaps the suffering of Jackson and all of us hollows us out in a sense, strips away all that is non-essential, and makes a larger space for God’s love.
It’s a mystery that with our limited powers we can not fully understand. But we can have faith. “We know that God makes all things work together for the good for those who have been called according to his decree.”
Jackson was surrounded by love and support from many people of the Apostolic Christian faith. Tomorrow at 10 am he will be laid to rest at the Goodfield-Congerville Apostolic Christian Cemetery in Congerville.
We thank God for the opportunity to know and love Jackson Jean-Baptiste, the boy from Haiti with the beautiful smile, and we ask God’s blessing upon his soul and upon all those who love him.
Monday, February 06, 2006
OSF: A More Controlled Rant:
A couple of posts ago, I went off on OSF St. Francis, for good reason. Those non-Irish Catholics out there may have considered my words and attitude too bitter. Perhaps it was. But Jackson’s life was at stake, and I think it was a time for some bitterness. Let me discuss OSF St. Francis Medical Center in a more considered fashion.
First of all, in 2001, they fired John after he worked 13 years in the emergency department. By all accounts—co-workers, patients, satisfaction reports, awards—he was an outstanding, caring physician. He won numerous awards for his teaching of med students and residents. This excellence was recognized by many, including administrators involved in his firing, one of whom brought his son to the ED and asked for John to put in his stitches.People wanted John to be their doctor because he’s good and they know he cares. His skill has come from decades of intensive studying combined with a touch that I think he was born with. When he was a resident, one of his attending doctors called him “the best diagnostician in Peoria.”
So why was such a good doctor, who incidentally is a devout Catholic who completely takes the mission statements of the Sisters to heart—-he still carries a card with the mission statement printed on it around in his wallet—fired? John was always agitating for change in the ED; he wanted things to improve for the patients. The satisfaction rate for the ED was only 33 percent. His agitation culminated in a letter to the hospital administrator,Keith Steffen, in which he discussed his concerns about a shortage of beds for emergency room patients. The night before he wrote the letter, some of his patients had discharged themselves because they were tired of waiting. John offered to meet with Mr. Steffen to discuss ways that the situation might be improved. John copied his supervisors, including Drs. George Hevesey and Rick Miller on this letter.
This letter resulted in John being placed on probation. A little over three months later, he was fired. Lots of ugliness was directed by hospital administrators at John between the letter and his firing. Many big institutions and systems resist change, even if the change is positive. John’s only desire was to improve the functioning of the ED and the hospital. People in responsible positions weren’t interested in this—maybe it would create more work for them, perhaps they didn’t like the problems they were responsible for being pointed out, emergency dept. patients aren’t the highest priority.
Lots of people are unjustly fired; they go on about their lives. Physicians have left Peoria because of things OSF has done, like close their mental health unit. It helps to understand that John cares about St. Francis in a way that few of us—at least me—have cared about their work places. He loves St.Francis. These feelings began when he worked there as an orderly when he was 18. In his last year of med school, the only place he listed as a residency choice was, you guessed it, St. Francis. While he worked there, he loved it.He felt that practicing medicine in a Catholic hospital allowed him to align his work with his religious values. Being an emergency room doctor also gave him the flexibility to spend part of the year working in Haiti. He also loved teaching the residents and med students. John is always interested in learning and improving, another trait that makes him such a good physician.
Despite the words of Chris Lofgren at the time of John’s firing that the hospital’s support of Haitian Hearts would continue, such was not the case.Less than a year later, the hospital withdrew support from HH claiming the program owed them a lot of money. People who volunteered for HH raised well over $1,000,000 that went directly to OSF to pay for Haitian children’s medical care. Almost a half million was raised during the year OSF discontinued its support.
OSF can do what it wants. It can discontinue a program and no one can force them to continue. But we can point out the moral discrepancies in their behavior. They are supposed to be a Catholic hospital. If they aren’t going to consider caring for new Haitian patients, don’t they have some kind of moral obligation to care for those pathetically poor Haitians who have already been their patients?
In the case of Jackson, his mitral valve that had been repaired at OSF now needed to be replaced. This diagnosis was made in May 2005. John notified OSF and asked them to accept Jackson as a patient. He offered OSF$10,000 for Jackson’s care. OSF refused. In December, when Jackson was so critically ill, John upped the offer to $20,000. A company would donate the heart valve, as they have in other cases. HH is not swimming in money; we have under $50,000 in our account with much of that money earmarked for patients less critically ill than Jackson who have been accepted at other hospitals. What kind of a Catholic hospital turns its back on poor Haitians who were once its patients? Jackson would have had a much better chance at life in May. Furthermore, it is difficult to find hospitals willing to operate on Haitian children who were operated on at another hospital.
OSF would say that they no longer want to work with John because of his efforts to point out the flaws of the hospital, regarding HH and its role in the emergency response services in Peoria. But shouldn’t their concern be Jackson, their poor, Haitian patient? In my opinion, Jackson died in part because OSF refused to accept him. And I believe they had a moral obligation to do so.
So again, what kind of Catholic hospital fires a doctor like John, discontinues a program like Haitian Hearts, a program, which by the way,benefited the hospital with excellent PR and patients who taught medical staff an enormous amount, and refuses a former patient like Jackson? What kind of a Catholic hospital? A nominally Catholic hospital. This phenomenon is not limited to OSF. Across the country, Catholic hospitals that were formerly run by Catholic sisters have been taken over by large companies and secular administrators. These hospitals have become so large and complicated to run that the religious orders have largely ceded control of the institutions to people who might not have the mission uppermost in their minds—or anywhere in their minds, except in complying with the law and garnering good publicity. This has happened at OSF in what I believe is a particularly toxic fashion.
Part of the problem is how large OSF is and how much power it wields in Peoria and Illinois. It is a $1.6 billion organization and the second largest employer in Peoria. People are very hesitant to be critical of them. And without naming names, part of the problem is some of the people they have in key positions. Another part of the problem is the large salaries that the administrators receive. Having attended Catholic schools and worked at a Catholic social agency, I have spent a lot of time thinking about what makes an organization Catholic. Is it a crucifix hanging in each room? Retreats during which the life of St. Francis is described? These are nice, but mere window dressing. I am convinced that an integral part of what makes an organization Catholic is sacrifice, even sacrifice that hurts. Where is there any evidence of sacrifice at St. Francis? Do employees make less money there?Are their poor patients treated as well as or better than rich patients? Do those in charge act like servant leaders, as Jesus did? Is ethical behavior on the part of employees encouraged and supported? How is OSF any different than its secular counterparts? I don’t think that it is, except where the law compels it to be.
I tell John that OSF isn’t the place he thought it was. But he knows there is much that is good at OSF. He is sad to see the place railroaded by a few who don’t have patients and the mission as their first interests. We can’t force OSF to change; it is too big and too powerful and others would have to join the effort. But we can continue to point out where they fall morally short. We can and will continue speaking truth to power.
Jackson shouldn’t have died.
posted by Maria Carroll @ 6:48 AM
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On February 4, 2006, OSF had a bioethics seminar that I attended in Peoria. The following is a report of the seminar:
Catholic Bioethics Seminar–February 2006
On Saturday, February 4, 2006, a Catholic Bioethics Seminar was held at St. Sharbel’s Church in Peoria, Il. The key note speakers were Father Michael Bliss, Dr. Gerald McShane, and Joe Piccione.
Father Bliss is OSF’s chaplain and a member of the ethics committee at OSF. Dr. McShane is employed at OSF Corporate and is Chair of OSF Ethics Committee. Joe Piccione is the OSF Corporate Ethicist, a lawyer, and philosopher.
Father Bliss gave the first talk. His comments included that “medical ethics is doing good for people in a good way”, “we need to recognize the patient’s dignity and realize the greatest good for the patient”, and that oral contraceptives can, at times, “bring about death”. Father held up a pamphlet describing the ethical and religious directives of the bishops and stated it was very good and easy to read. I happened to have my own copy with me at the seminar that I brought with me.
When Father was done speaking, he asked if there were any questions from the audience. I raised my hand and stated that Haitian Hearts had buried a patient one week prior who had been refused by OSF, and I wanted to know why and how we can avoid this “problem” in the future. Well, Father Bliss would have none of this and cut me off mid-question and stated that he would not answer my questions and had no comments. I told him that I thought it was his responsibility to tell the public why OSF had abandoned this young Haitian man (Jackson Jean-Baptiste). He said “no further comment” and that Bishop Jenky had dealt with this problem in the past. That was it. He obviously did not want the crowd to hear my questions or comments and what was he going to say that could possibly defend OSF’s actions and went against the ethical directives of the US bishops. He was in a losing position and knew it.
The next speaker was Dr. McShane. He gave a talk on doctor-patient relationships and said that this relationship is fundamental. He had a nice but very simple handout. Compassion and caring are key. He referred to himself as a good physician. His handout referred to the emotional, physical, and spiritual needs of the patient. His handout went on and on. Dr. McShane’s voice was shaky and nervous. He stated halfway through his speech that “John Carroll will probably have some questions for me”.
When Dr. McShane was done with his pitch, he asked if there were questions and looked at me. I again raised my hand and told him that his words were beautiful but that OSF had acted the opposite with regards to my dead Haitian patient and I wanted to know why. To my surprise, Dr. McShane stated that he would not answer my question regarding the deceased Haitian that was refused care at OSF. He told the crowd that I was bringing up this topic “every six months”. Dr. McShane is paid a huge salary by OSF Corporate to give these talks and he is very grateful for the generosity of the Sisters.
There was a panel discussion that followed and a question was asked regarding birth control pills being prescribed by a Catholic medical center. Dr. McShane stated that it would be “sinful” to use the pill as an oral contraceptive. Joe Piccione shook his head "yes". I asked, at that point, why Joe Piccione had come to Peoria in 1993 to help establish a protocol so OSF physicians and the OSF Health Plan could offer oral contraceptives and sterilization. I had the newspaper article in my hand that described what Piccione and our previous bishop and the OSF Sisters had developed last decade regarding oral contraceptives and sterilization. Piccione tried to defend his actions and stated that Bishop Meyers agreed with him as does Bishop Jenky and actually Pope Benedict would be in agreement with OSF’s stand on birth control pills and their allocation. Piccione was really reaching when he said that the Pope would be in agreement. I asked Joe if it was about money and he replied “no”. However, I held up the PJS article where he was quoted about the need for oral contraceptives if OSF was to stay competitive in the health care field. Joe seemed to be at conflict with his statements a decade before. At that point, the priest who was the moderator became quite angry with me and told me that I could not ask any more questions. This poor priest is a parish priest at St. Sharbel’s and probably was worried that OSF would be upset with him if the speakers were made to look too hypocritical.
So that was that. The bioethics seminar was very elementary and misleading to the public and some of the crowd went away confused. I am also sure that most people there would have sided with the ethicists because my questions and comments were pointing out things that the crowd wouldn’t think were possible at OSF with the Bishop and even the Pope supporting. Good people, like the crowd at St. Sharbel’s, want to believe that their Catholic leaders are leading them in the correct moral direction. This is such a shame and emblematic of the horrible situation in which the Catholic Church in the United States finds itself today.
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The Haitian Cook and St. Augustine
April 2, 2006
When Jackson Jean-Baptiste was with Maria and me during the month of December, he was really sick. However, many people here got to know him as much as Jackson would allow. People became attached to him in some way probably due to his fragile condition. He was very thin, spoke softly and deliberately, and walked slowly. But his mind worked very well.
Maria and I got to know him quite well. He told us about his mother’s life. She travels 12 hours once a week to a southern coastal city in Haiti to buy used clothes and sell them on the street near Jackson’s home. She makes the round trip in one day.
His father worked in a quarry. One day, when Jackson was just a boy, while his father was hanging from the side of the cliff by a rope, an enemy of his father's in the neighborhood cut the rope with his machete. Jackson’s father plunged to his death, suffering a massive head injury. Jackson told us the story impassively. When I asked him if he knew where the man lived that cut the rope, he replied “yes”. Nothing was ever done to bring the man to justice. Jackson seemed to accept that. He couldn’t do anything about it anyway. He was poor.
Last night, the cook approached me near the kitchen. He is a very black man with a kind face and nice smile. He told me that Jackson’s death had “hurt his (the cook’s) chest”. I told him I felt very sad, too. The cook just shrugged his shoulders and looked at me with his very expressive eyes. He said, “Doctors are not God. You did all you could for him and God did the rest.” But the cook did not know, and will never know, our riches at home and why we should have helped God with Jackson. We simply did not do our part in Peoria.
The Haitian cook, who works very hard for very little salary, gave us more support regarding Jackson’s death than did any member of the leaders of the Catholic Medical Center in Peoria that rejected Jackson during his days of suffering and misery when something could have been done. The hierarchy of the Catholic Diocese had no supportive words either regarding Jackson as we buried him near Peoria.
Yet, this poor Haitian cook told me how hurt he was that Jackson died. Jackson’s death meant more to this poor man than all the rich men I know at home. A Haitian had lost another Haitian brother. Rich men lose stocks, jobs, money, homes, and objects. The death of Jackson meant nothing to the rich at home.
Saint Augustine wrote:
Let us by our prayers add the wings of piety to our alms, deeds, and fasting so that they may fly more readily to God. Moreover, the Christian soul understands how far removed he should be from theft of another’s goods when he realizes that failure to share his surplus with the needy is like theft. The Lord says: “Give, and it shall be given to you; forgive, and you shall be forgiven.” (Cf. Luke 6:37,38)
Posted by John A. Carroll at 6:04 PM
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Nadia
Greetings from Haiti.
On Thursday morning, April 23, 2006, Jackson Jean-Baptiste's sister Nadia
showed up for the first time since we have been in Haiti this month. It
was the first time we saw her since Jackson's death in January.
As she walked towards us, this very lovely 19-year-old girl had a little
smile and was wearing blue jeans and a blue shirt. However, she walked
towards us very unsure of herself and very docile, like poor Haitians
are trained to be. We hugged her and she sat down at our table with us.
After Jackson had died, I called her and told her the unfortunate news.
However, I heard through the Haitian grapevine that she was not sure that
Jackson was really dead. As we talked the other day about things, her
eyes welled up with tears because she had never seen me in five years
without Jackson close by. Jackson was not appearing from around the
corner and never would.
Nadia started to cry slowly with one huge tear that trickled slowly down
her right cheek. That turned into massive body shaking sobs that went on
for 30 minutes as she lowered her head to her knees.
I told her how sorry we were for Jackson's death. Kleenex after Kleenex
only helped a little. My weak attempts to tell her that Jackson was in a
better place and wasn't suffering anymore did not help much. Nadia
stated that she understood, but Jackson was her "only big brother". She
had lost two other brothers and her father was murdered.
Nadia asked to see the album of pictures that we brought with us of
Jackson's funeral in Illinois. As she paged through the little album,
she sobbed more and shook her head no. I think for the first time she
realized that Jackson was gone and this was all real and it was really
bad. Jackson was indeed buried on the hillside of a little cemetery
overlooking a dreary looking brown cornfield in the Midwest.
Nadia asked why Jackson's face was swollen in the casket and his lips
turned down. I told her that before he died his face was swollen and
that is how he ended up after the mortician's work. She stared at the
face of her brother that used to make her laugh by dancing and singing
with the radio on and acting like he was playing the guitar. She told
jokes with him outside their shack in the morning on the mountain
overlooking Port-au- Prince. How could Jackson look so sad in death?
This was all too much.
She also saw photos of all the white Americans that had come to his
funeral and sang for him in the cemetery on that cold and rainy January
day. Nadia saw the faces of his host families at the wake and cemetery.
She saw the statue of St. Martin de Porres at the church where the
funeral Mass was held in Peoria. There was an amazing likeness of the
statue's face and Jackson's live happy face.
After an hour of this misery, Nadia was able to calm down, and we
devised a plan to get Jackson's heavy suitcase, laden with gifts for
him while he was alive, to his home two hours up the mountain.
Yesterday, on Saturday morning, Nadia returned with a driver to
transport Jackson's belongings and my wife Maria and I to his home to
see his mother for the first time since his death. Jackson's 15 years old
brother Gabriel Moise came along. We threw Jackson's suitcase in the
back of the pickup, and after the driver took a rock he had wedged
between his battery and hood and banged on something in the motor, the
ignition kicked in and we were off through the crazy busy streets of
Port-a-Prince.
Coursing up the mountain was a painful experience. The roads were jam
packed with people and are full of holes and curves, stalled Mack
trucks, and people backing their vehicles down their lane directly at
us.
When we arrived in Jackson's village called La Boul, we were only able
to go so far until the road turned to dirt and holes and the driver
pulled over. We all got out at that point and lugged Jackson's suitcase
down slippery and steep dirt trails. These were the same hills and roads
that Nadia and her mom had carried Jackson on a chair to see us on
December 1, 2005, when he was too weak to walk. Knowing what I know now about Jackson's heart, it did not seem humanly possible that Jackson survived that trip.
I had been to Jackson's home five years ago and the surroundings all
started looking familiar. As we approached Jackson's home, approximately
25 of his neighbors were on a front porch of the home next to Jackson's
singing and praying very loudly over problems they were having.
Jackson's mom Rosette, older sister Claudette, and eight-year-old
brother were there to greet us on a small patch of dirt that serves as
their front yard. Rosette was not smiling but she gently hugged us. I
could hear her wheezing from her asthma. She is 44 years old but appears
quite a bit older.
She invited us into her little two-room shack. We entered through the
front door, which is a piece of cloth, into a room about 12#12 feet. The
floor is cement and the walls are cinderblock and cement. The roof is
the usual Haitian corrugated metal roof with holes in it where we could
see dots of daylight above us. One light bulb hangs suspended from a
wire that is fed with borrowed electric current from the big electric
line close to their home.
An adjacent darker smaller room's walls are caving in and its roof is
leaking even worse than the main room. Rosette stores her second-hand
clothes ("pepe") that she buys in a port city in this room and sells on a
street corner near her home in La Boul. Nadia and her little brother
sleep in this room.
Jackson's bed was to our immediate left in the first room and they have
turned it into a little "shrine". The bed has a spread and a small pillow.
A red covered Bible with "Jackson" scribbled on the side sat on the
pillow as did his fake Rolex looking watch and his picture album of all
the blans that helped him in the United States when he had his previous
heart surgeries. A ragged stuffed little cloth dog that must have been
Jackson's sat guard in the middle of the bed facing the pillow.
Rosette talked about how much she appreciated what we had done for
Jackson. She spoke of her life and that not much is left for her. She is
grateful for her children, especially Nadia, who seems like she can help
the most now that Jackson is gone.
Maria slowly unloaded Jackson's suitcase with his second-hand clothes
that were still neat and folded. At this point, Rosette started to cry.
Maria removed a smooth heavy rock from the funeral that was engraved
"Jackson Jean-Baptiste Jesus Loves You". Rosette could not read the rock
because she is illiterate or the numerous notes from people in the
States. When I handed her the funeral pamphlet with Jackson's smiling
face on the cover, she barely looked at it and did not open it. His
sisters glanced at his obituary in the Peoria Journal Star, but could
not read the English.
Maria explained who gave which gifts and Rosette shook her head as if
she understood.
We gave her only a small portion of the money that was donated to her at
Jackson's funeral, so if she gets robbed, the thieves will get only a
small portion of the donation. We will disperse the rest to her in the
same quantities when we come in the future. Also, it would be nice if a
work team could be organized to build her a new home or patch the leaky
roof and repair the wall that is crumbling in the dark room.
Sister and Bishop Jenky, I am going to ask Rosette if she would like to
visit the United States so she can meet Jackson's host families in the
Peoria area, his doctors and nursing staff at OSF, and can see his grave
in Goodfield, Illinois.
I would like you to be able to meet her. She will thank you for all you
did for Jackson but will have some questions for you regarding Jackson's
demise in 2005.
She will probably ask you, Sister Judith Ann and Bishop Jenky, what your
understanding was regarding Catholic social teachings, the Bishops'
Ethical and Religious Directives regarding health care, and the OSF's
Sisters mission philosophy regarding her son. Rosette will want to see
the plans for the new 200 million dollar Children's Hospital of
Illinois, and may ask you why you would not accept 20,000 dollars for
Jackson's care in Peoria when he really needed your resources. She will
have specific questions for Keith and Paul and will ask some ethical
questions of Joe and Gerry, I am sure. Doug, her legal questions will
probably be limited, but I am sure she would like to meet you anyway
since you played such a large role in Jackson's life and his death.
I will obtain her travel visa and Haitian Hearts will purchase her
ticket and travel to and from Peoria with her. You don't have to worry
about these details.
Please let me know when a good date would be when we could all get
together with Rosette so open and honest communication, a central OSF
mission statement, can occur. She lost her son. She deserves this, don't
you think?
Sincerely,
John Carroll
PS Would you please circulate this to the people at the top if their email addresses don't appear? Thank you.
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April 3, 2009
Looking Back...How Could This Have Happened
As the years passed in the 2000s, OSF continued their abandonment of Haitian Hearts patients that were treated at OSF and needed to return to OSF for further surgery. And as we had warned early in the decade, the Haitian kids began to die.
Their heart repairs performed at OSF would not last forever; everyone involved with their care knew they would need further surgery at some point. Their doctors wanted them back. Their nurses wanted them back. The ICU cleaning ladies wanted them back. Their host families wanted them back. But then when they needed surgery, OSF would not allow them to return to OSF to definitive repairs.
Jackson Jean-Baptiste died in January 2006 and Maxime Petion died in January 2007. They both went through agony before dying horrible deaths.
This is so hard to think about, write about, and see Jackson's and Maxime's eyes in pictures from several years ago. They trusted us so much. Their deaths were needless.
How could this have happened?
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December 27, 2020
When kids are growing they deposit more calcium in their bones. And during this normal growth, Jackson's body had placed calcium on his mitral valve which had been operated five years prior. And because the valve leaflets were so laden with calcium, it wouldn't open properly (mitral stenosis) and his heart slowly failed him. Thus, he needed further surgery for the removal of his diseased mitral valve and placement of a mechanical valve in the mitral position.
Replacing a mitral valve is not uncommon in the United States. But Jackson was denied this surgery (by a skilled mitral valve surgeon in Peoria--Dr. Dale Geiss) at OSF in Peoria.
In Peoria in the late 90s and early 2000s, I was hardly ever asked by physicians how Haitian kids were doing who were operated at OSF and then taken back to Haiti by me. I was astounded that hardly anyone wanted to know.
But I think I was confused about this because I was being stupid. I think these physicians, who had participated in the Haitian kids' care in Peoria and had given excellent care to my kids, were much smarter than I was. I think they knew that it was going to be very difficult for me to bring these kids back to OSF for further heart surgery if needed. I think they suspected that OSF Administration was going to attempt to block Haitian kids from coming back to OSF. And that is what happened.
Yesterday a friend of mine who works in Haiti read the above post and made this comment--
"I have lost several people in Haiti who came to me for help. Their bodies were ravaged with cancer, far beyond treatment. I could only offer palliative care along with my love and compassion. I cannot express in words how touched I have been to be with people in their dying days, especially people with such deep faith and sincere gratitude for my presence.
"The despair that follows, knowing the end result would be different if only these people had gotten treatment earlier, is always with me. I have not had to suffer the additional trauma that you have, of trying so desperately to provide care and being repeatedly refused. Praying that God's peace fills your heart."
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(Will be updated.)
