Ferna

 

Monday, July 31, 2006

Ferna

In April I examined a seven-month-old baby girl in the clinic in Port-au-Prince. She only weighed nine pounds and had been having fevers and labored breathing. She was brought to the city by her mother from her home about an hour north of here. Her name is Ferna.

Ferna’s exam revealed a loud murmur over her chest. A murmur is “audible turbulence” from flow of blood through the heart. Some murmurs are considered innocent and others signify real disease. Ferna’s murmur definitely reflected real disease. She also had a fever and crackles in her upper portions of her right lung which most likely meant she had some type pneumonia.

I told Ferna’s mom that she needed to be admitted to the hospital across the street from the clinic. Her mother was very happy to receive the news that her daughter would receive care. However, there was no room in the pediatric section of the hospital, so she and Ferna slept in the hospital courtyard that night and Ferna was admitted the next day.

Her chest x-ray revealed a large heart due to congenital heart disease and her lung fields were filled with an infiltrate that appeared to be tuberculosis.

Several months have passed since Ferna was admitted and she remains in the hospital which is the best place for her in Haiti because she is fed nutritious food prepared in the hospital, gets her medication each day, and her mother gets to visit her. She has been placed on the national Haitian tuberculosis regimen for which is three drugs for two months followed by two drugs for the following six months. Her fevers have abated and she looks some better.

However, her congenital heart disease persists and her echocardiogram performed here in the capital shows a hole in the wall between the lower chambers of her heart which allows too much blood to circulate through her lungs with each heart beat. Therefore, she is taking diuretics to keep her lungs dry.

So now what? Do we successfully treat her tuberculosis and discharge her to her city north of here so she can die from her congenital heart disease that can only be repaired with surgery? If that is the case, why are we treating her tuberculosis so aggressively so she can die from another treatable disease?

Paul Farmer and his colleagues have proven that treatment of multidrug-resistant tuberculosis and even HIV is possible to successfully do in resource-poor settings, such as Haiti. Treating these hard-to-treat diseases actually improves the general level of care given to poor populations. Who would have predicted this? Would performing heart surgery in Haiti someday increase the overall level of medical care? Extrapolating from Farmer’s research would say that it would.

So if developing world patients receive treatment for HIV and very hard-to-treat tuberculosis, why does Ferna not deserve surgical treatment for the tiny hole in her heart that is wreaking havoc on her circulation and will cause her death? What exactly is the downside to saving Ferna’s life?

I propose that Ferna be operated quickly in the United States. I also propose that no baby in the world should die from a hole in their heart in 2006 due to negligence from the world that has everything. The technology is available and a good repair of a mechanically deranged heart can lead to many good years for the child. With the obscene amount of money spent in the developed world for cosmetics, dog food, cigarettes, and military expenditures, developed countries have no excuse not to operate these children from around the world and set up programs to teach developing world physicians the science of delicate pediatric heart surgery.

I also believe that skilled physicians in the United States that want to perform pro bono surgeries in their medical centers on babies like Ferna should be allowed to do so. Doctors need to do what is right and patching holes in babies that are slowly suffocating is the right thing to do. If Catholic hospital administrators disagree because of medical center costs, they need to figure a way to lower costs.

However, if only one doctor approaches hospital administration regarding operating a child from abroad, he or she can easily be rejected and marginalized. Physicians need to show a united front with the entire pediatric department when asking to treat international children each year. If administrators disagree, they should be removed from their positions as the Ethical and Religious Directives for Catholic Health Care Services imply (Directive 5). Catholic bishops around the United States need to support these physicians and children like Ferna and not try and just appease the big Catholic Medical Industry in their diocese. The Catholic medical centers need to be challenged to do the right thing and act for the reasons for which they were founded---taking care of the poor who need their care.

The Haitian physicians and medical system are doing their best with Ferna. Her mother now hopes and prays for heart surgery for her baby daughter in the United States. Ultimately, Haitian physicians need to be taught the intricacies of heart surgery and the technology needs to evolve in Haiti for pediatric heart surgery which requires bypass. Haitian babies need to be operated IN Haiti by Haitian physicians. But in the meantime, Ferna is not going to wait for all of us to make this happen. She needs help now.

  
The clock is ticking. Any advice on what I should tell Ferna’s mother?

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Comments in 2021--

• Too strident? Or not strident enough?
• The "Catholic Medical Industry" that I was referring to above is obviously OSF in Peoria. And the diocese is the Catholic Diocese of Peoria, but it could be ANY Catholic diocese anywhere. 
• Physicians are still marginalized and fired for speaking out. For example, MedPage Today February 3, 2021 has an article about a physician from Canada who was recently fired--"In mid-January Brooks Fallis, MD, was relieved of his duties as interim medical director of critical care at William Osler Health System in Canada's Ontario province. Fallis had publicly criticized the provincial government's response to the pandemic, most recently to the new coronavirus variants. Fallis said he was stripped of his directorship because the government pressured Osler administrators and because he did not warn them about all his media appearances. Officials with Osler and the provincial government, however, denied his claims. Then on Friday, Ontario issued a six-point plan to address the variants, echoing some of Fallis's points. "I really believe that what happened here was wrong," Fallis told the Toronto Globe and Mail newspaper. "It sends the message to others, if they speak up, there will be consequences."
• Physicians need to have a united front and not go it alone when attempting to effect change.
• Policy failure by Haitian Government
• HCA now diagnosing and operating in Haiti until grounded by covid and civil unrest.