Suze and Katia

Suze 2020

Sunday, June 18, 2006

Suze was a typical Haitian patient--- young, polite, softly-spoken, and dying. When Maria and I saw for the first time in 2004, she was very thin and barely able to walk due to severe shortness of breath with any exertion. Her heart exam revealed that her mitral valve was not working right. And to make matters worse, she had had a stroke due to a large blood clot in the left atrium of her heart. 

She told us how, not long before seeing us, she passed out one day and woke up on a gurney in an emergency department of a small hospital near her home in one of the slums of Port-au-Prince. When she came to, she was looking out the slats of a window at her friends who were staring in at her. They had carried her limp body to the hospital after she had lost consciousness and taken up a collection of money to get her admitted to the hospital for a workup.  

Suze survived the hospitalization but her tests showed that she had severe valvular heart disease because of rheumatic heart disease. And she needed valve surgery to stay alive. Suze's Haitian cardiologist referred Suze to Haitian Hearts.  

Katia was another young lady who was referred to us about the same time as Suze. When we examined Katia for the first time in 2004, her aortic valve was very leaky---it would not close all the way which allowed blood to run backward and overload her left ventricle. Katia was also in heart failure for the same reason as Suze--rheumatic heart disease. She needed surgery to repair or replace her aortic valve. 

Rheumatic heart disease has been around as long as strep throat has afflicted humanity. For some reason, when one gets strep throat, the body's immune system fights the streptococcus bacteria but at the same time, the immune system may attack the heart, joints, brain, and skin. And this phenomenon is called “antigenic mimicry.”  

As bad as strep throat can be, only a few percent of kids who get strep throat, even if they go untreated with penicillin, will ever go on to rheumatic fever. And this makes me wonder how many strep infections must occur in Haiti to eventuate in so much crippling heart disease. 

Suze and Katia were typical cases of severe rheumatic heart disease. They most likely had strep throats as kids (maybe more than one episode) and ended up with damaged valves as teenagers. And now in their early 20s, both of their hearts were failing and had turned them into young women without long-term futures. 

Rheumatic fever is a major public health problem in many developing countries like Haiti. Two-thirds of the world’s population is considered poor and this is where rheumatic fever is found. The magnitude of rheumatic fever in the developing world is the same as in the United States 60 years ago---before the widespread use of penicillin. Rheumatic fever is not gone in the United States, but it is not the first thing I think of with an American kid who presents with joint complaints and fever.

From a public health standpoint, rheumatic heart disease is a big deal in the developing world. There is a real danger that research regarding atherosclerosis in the developing world will divert resources and attention from rheumatic heart disease, cardiomyopathies, and tuberculous pericarditis. Of the nearly 2.4 million children with rheumatic heart disease living in developing countries, nearly half live in sub-Saharan Africa. According to Lancet, June 10, 2006, “They cause great morbidity and mortality in young, economically active people, but with isolated exceptions, they are largely neglected targets of epidemiological, etiological, and therapeutic research.” 

So, what about Suze and Katia?

Katia

We left Haiti after examining Suze and Katia with their echocardiograms on VHS tapes and returned to the United States and began looking for a heart surgeon and medical center to accept them for heart surgery. 

I remember talking to a heart surgeon in Florida who operated on adult patients with valve problems. I told him about Suze and Katia and specifically remember putting both of their VHS echocardiograms inside the pocket of his white doctor coat he was wearing and asked him to study the echocardiograms. He agreed that he would.  

Several days later, back in Peoria, the surgeon called and told me that he had reviewed both echos and that both women, Suze and Katia, were inoperable. This was not the news that I wanted to hear but I thanked him for his opinion and I asked him he would send them back to me in Peoria.  

In the meantime, we had found a new heart surgeon who volunteered to look at the echocardiograms. Almost immediately, he let us know that he would operate both Suze and Katia. 

In November 2004, Maria and I returned to Haiti and got the girls. Since Suze was sicker, she stayed with us and Katia stayed with another host family before their surgeries. Suze was indeed sick--having trouble slowly climbing one flight of stairs. However, on Thanksgiving Day, Suze enjoyed her first snow and had Thanksgiving Dinner with us. 

Not long after, both Suze and Katia were successfully operated. Both had valve replacements because their valves were too damaged to be repaired. 

Both young ladies recovered without complications, and about six weeks after their surgeries, Maria and I drove them to the airport very early one morning. They both returned to Haiti on the same flight. We had returned them to the chaos of Haiti and we both felt very bad. 

During the last 15 years, we have seen Suze and Katia often. Suze lost her mother in 2019 which was very upsetting to her. Katia is married and has two small children. 

During our visits with them, I examine them and assess their need for an echocardiogram. Both Suze and Katia are doing fairly well. However, compliance with warfarin--the blood thinner to keep their artificial valves free from clot-- is a constant challenge. And that makes me worry. 

There are many patients in Haiti like Suze and Katia who have suffered from rheumatic heart disease. And most of them do not make it out of Haiti to have their valves operated. 

The Lancet, 2006--

“Eradication of rheumatic fever depends on social changes, including improved primary health-care services, elimination of poverty, better housing, and application of existing knowledge on primary and secondary prevention of the disease." 

Haiti has a long way to go before rheumatic heart disease becomes a thing of the past. 

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Chicago Tribune

Haitians get priceless gift
Illinois doctor helps open the door for heart surgeries

By Deborah Horan Tribune staff reporter
December 6, 2004

When the pain came, as it often did, attacking Katia Cesar's heart with a breathtaking, debilitating cramp, the young Haitian woman would squeeze a pillow to her side, wait for the spasm to subside and count herself among the lucky ones.
Rheumatic fever had damaged her heart years ago, causing the skin on her throat to rise and fall with each heartbeat and leaving her unable to climb the hilly streets of Port-au-Prince, the Haitian capital.

But a chance meeting in Haiti between her uncle and a Peoria doctor led Cesar to a Joliet heart surgeon who could put an end to the painful episodes and ultimately save her life. It's a journey she attributes to a higher power.
"It was God's hand," Cesar, 21, said of the day she saw Dr. John Carroll, a Peoria internist, at a clinic in Port-au-Prince. "The Haitian doctors had told me that I had no hope to live. I was so discouraged, every day I cried."

On Friday, Cesar successfully underwent a three-hour operation in Provena St. Joseph Medical Center in Joliet, where doctors replaced her aortic heart valve with a man-made prosthetic valve.

She became the 111'th patient to receive care in U.S. hospitals since 1995 under the auspices of Haitian Hearts, a charity founded by Carroll that is devoted to helping patients fmd treatment for heart disease and other serious maladies. The treatment is unavailable to people in the crowded and violent shantytowns of Haiti, the poorest country in the Western Hemisphere.

"She's a very serious case," Carroll said, days before Cesar's operation. "She would likely die without surgery."

Cesar's uncle, a waiter, met Carroll while at work at the hotel where the doctor stayed during his visits to Haiti. The two struck up an acquaintance. Then one day, the waiter told the doctor about his niece's "sickness of the heart." The conversation catapulted Cesar from the crowded and anonymous ranks of Haiti's gravely ill onto a select list Carroll uses to track heart patients he knows are in dire need of care.

He shopped around for a hospital that would perform the surgery free of charge and found St. Joseph. He persuaded the U.S. consulate to grant Cesar a three-month visa to America.

"I was nervous when they told me I was going to America" Cesar said in a recent interview at the Franciscan Sisters of the Sacred Heart convent in Frankfort, where she stayed while she awaited surgery. "I was so happy."

Two other Haitian patients who arrived with Cesar on Nov. 13 will also undergo surgery arranged by Haitian Hearts, including Suze Lapierre, 26, scheduled for heart surgery at St. Joseph. Caleb Derestil, 16, who suffers from a rare cancer, will be treated at St. John's Mercy Medical Center in St. Louis.

In a little less than a decade, Haitian Hearts has raised $1.2 million from individuals and companies to bring patients, mostly children, to U.S. hospitals for surgeries unavailable in Haiti, including heart bypasses, Carroll said. Cesar and Lapierre are the first adults sponsored by the group.

Most of the funds raised went to the Children's Hospital of Illinois at OSF St. Francis Medical Center in Peoria where Carroll worked in the emergency room until 2001. The children's hospital took in some 60 children before it ended its support for Haitian Hearts in July 2002, about six months after Carroll and St. Francis parted ways following a dispute regarding hospital policy.

Since then, Haitian Hearts, led by Carroll with assistance from other Downstate volunteers, donors and board members, has had some success finding other hospitals to admit needy Haitian patients.

Carroll, 41, has been passionate about bringing Haitians to the U.S. for treatment since he first traveled to clinics in the Haitian countryside with a church group in 1981 and fell in love with the people.

He took an interest in tropical disease and noticed a high number of patients had severe heart problems. But hospitals were poorly equipped and underfunded, and patients were often at the mercy of the political violence that has plagued Haiti, particularly since President Jean-Bertrand Aristide was forced to flee the country in February. Carroll's solution was to find help for as many of the patients as he could outside the country.

"It's just so important that children's hospitals around the U.S. and Canada open their doors to a child or two a year," he said. "We probably have 20 kids on our list that need to come here for surgery."

Poverty and ignorance compound the problem. Both Cesar and Lapierre live in houses without plumbing or running water; neither one knew they had contracted the strep throat that turned into rheumatic fever and damaged their hearts.
As a child, Cesar remembers always being sick with fever. At 14, things got worse: Her legs swelled, she couldn't walk without feeling winded, and she couldn't study or play sports. When her mother took her to a community hospital, a doctor gave her medicine for anemia.
"They never revealed I had a heart problem," she said. "They didn't know what was wrong with me."

Three years later, another doctor discovered her bad heart and told her she probably would not live much longer. She sat without hope in her mother's tiny house in a crowded slum until the day her uncle told Carroll about his niece.

By then, Carroll had become locally famous. Haitians had heard about the American doctor who worked at a rural hospital five hours south of the capital. When he advertised his arrival on the hospital's radio station, patients would flock there and to the Lucella Bontemps clinic in Port-au-Prince to receive help for ailments common to the developing world: typhoid, malaria, tuberculosis and malnutrition.
"We'd get besieged with calls," he said.

All the while, he kept an eye out for severe heart patients, adding each new case to a handwritten scroll on which he logs a patient's medical condition and history of illness. Cesar was No. 43 on the list.

Lapierre was No. 30. She had been referred to Carroll a few months earlier by a Cuban doctor working in Haiti who discovered her damaged heart and knew the American doctor might be able to help.

"My heart was beating faster," Lapierre said. "I didn't know what was wrong."

When the U.S. visas for Cesar and Lapierre came through, their journey began. Carroll's sister-in-law Theresa Atchley met the women at O'Hare International Airport with coats and other clothing. The young women then went to the convent, where Lapierre spent two nights before doctors discovered possible signs of tuberculosis and pneumonia. Rather than expose elderly nuns to contagious disease, Carroll brought her to his home in Peoria for a few days. She is now staying in Minooka until the surgery.

Cesar remained at the convent, in a room usually reserved for friends or prospective nuns.

"I was suffering so much," Cesar said of her medical condition. "When I met Dr. Carroll, I felt I had hope again."
Copyright © 2004, Chicago Tribune
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