Global doctors paint bleak picture for children with heart disease in Haiti
When Dr. Alexandra Noisette returned to her native Haiti from Paris four years ago to begin treating Haitian children with heart disease, she knew it would not be easy.
“I could have actually stayed. But I wanted to come back to improve the care of these cardiac children,” she said, “to be useful to this community.”
But Noisette, one of the only pediatric cardiologists in Haiti and the only one working full-time in the highly specialized field, wasn’t expecting administering healthcare in Haiti to be as challenging as it has become in the last few years: regular road blockades, kidnapping gangs, chronic fuel and medication shortages, and widespread civil unrest leading to canceled appointments, or even death.
“It’s not easy,” she said. “If you have a child who really needs to have regular cardiology checkups, Haiti unfortunately is not the best place for him.”
This is the reality that concerns Haitian community advocates, Florida state Rep. Dotie Joseph, U.S. Rep. Frederica Wilson and the foster parents of a 9-month-old boy whom the Florida Department of Children & Families and a Broward County judge are trying to send to Haiti.
By birthright, Ector is a U.S. citizen. But in August, Broward Circuit Judge Jose Izquierdo, at the urging of DCF through its contractor ChildNet, ruled that he should be removed from the home of his foster parents, Tamara and Gerald Simmons, and sent to live with his maternal grandmother in Haiti. The change in custody, Izquierdo said, would reunite Ector with an older sibling and put him in close proximity to his legal father, who is not his biological dad. The legal father has shown no interest in assuming custody.
The Simmonses previously told the Miami Herald that Ector suffers from a heart murmur, and are concerned his condition could be more serious. As his foster parents, the couple said they’re worried that sending the baby boy to Haiti would leave him vulnerable to extremely risky conditions as well as inadequate healthcare for heart disease.
In Haiti, routine medical checkups are at the mercy of violent gangs who can shut down a hospital for days; fuel shortages that force hospitals and clinics to reduce services, or worse, temporarily close, and hinder the ability of doctors, nurses and patients to make it in.
Cardiac surgery is impossible. It requires travel outside of Haiti, which is becoming increasingly difficult with the inability of Haitians to get visas.
“The problems are real,” said Noisette, who runs a cardiac clinic at St. Damien’s Pediatric Hospital in Tabarre, the only healthcare facility in the country devoted exclusively to children. “Everything we are living in Haiti is especially real for children with cardiac issues.”
The Simmonses, who have been caring for Ector since he was less than a week old and his birth mother’s parental rights were terminated, want him to remain in the U.S. where he will receive the necessary care and where he has three other siblings who have been adopted and are in contact with one another.
So far the foster parents have not been successful in their efforts to have him stay so they can adopt him. An attempt to have a federal judge intervene in the case was dismissed last month, and on Wednesday Izquierdo has scheduled a hearing to review the case.
First reported by the Miami Herald, the custody case has ignited outrage in South Florida and beyond, with community activists and cardiac specialists raising concerns about the kind of care Ector will receive in a country currently undergoing an unprecedented crisis, on top of a deadly cholera outbreak sweeping the country due to poor sanitation and lack of clean water.
For the past two months, gangs have blocked the country’s main fuel terminal, leading to shortages of food, fuel and drinking water. Although the leader of the gang coalition responsible for the blockade at the Varreux terminal in Port-au-Prince declared over the weekend that fuel can start flowing again, safety concerns for drivers remain and distribution has yet to start.
“It just seems like there is a misconception about the idea that a kid with heart disease can be safely followed in Haiti, and it’s not safe right now,” said Owen Robinson, executive director of the Cardiac Alliance, a U.S.-based charity that provides cardiac care to children in Haiti.
Robinson recently submitted an affidavit in the custody case on behalf of the Simmonses. Recognizing that the legal process is out of his hands, Robinson said he really wants “for people to understand that if [Ector] goes back, even with our best efforts, he is not going to have anything close to the quality of the follow-up he would get in the United States.”
The alliance was co-founded by Robinson and Dr. Jim Wilentz, a U.S.-based cardiologist, 13 years ago and specializes in the needs of children in Haiti with congenital heart disease.
“Without access to routine check-up, any child in Haiti with CHD is at increased risk of worsened cardiac illness and death,” Robinson’s affidavit said.
Three years ago, the Cardiac Alliance, which had regularly sent teams of volunteer doctors to Haiti to provide life-saving surgery for children, had to evacuate physicians in the middle of surgery. Volunteers haven’t been sent back since.
“We’re not bringing any volunteers to Haiti right now,” said Robinson.
While alliance team members in Haiti are able to do echocardiograms and prescribe medications, Wilentz said they can’t get patients to curative procedures such as catheter diagnosis or treatment or corrective heart surgery.
Meanwhile, the needs have increasingly grown, while the pathways to care have rapidly become more difficult.
“If you are from Port-au-Prince or anywhere from another part of the country, there are physical blockades to get through most days just to be seen even if you have an appointment,” Robinson said. “The insecurity also affects the doctors and the nurses so most days they can’t go in and run a regular clinic.... Because of threats to their security, they don’t have fuel, or their colleagues are getting kidnapped.”
Robinson says the alliance currently has a list of 350 children in need of procedures like the closure of a hole in their heart, and other invasive cardiac care. Until recently, they took the kids to the neighboring Dominican Republic, which hasn’t been an option after its embassy closed.
“We’ve lost a lot of kids that way this year,” he said.
This story was originally published November 8, 2022 at 5:15 PM.
