Willgesta’s Hole in the Heart Surgery

New Media Fellows 2013

By Sokari Ekine

June 03, 2013

Also published at Black Looks

Recently I passed through the high security zones of Petion-Ville and Delmas on my way to Cite Soleil where policing is limited to the neighbourhood parameters. It’s very possible I was missing something and the police were hiding at the ready as the tap tap driver complained that he did not like coming to CS because there were bad people here.  Unfortunately with my limited Kreyol I could not understand the reason for his nervousness.   I had gone to visit Dr Carroll at the pediatric clinic at the ‘House of the Sisters’ where he has worked for many years.  The clinic is set in a large tranquil compound with a school, a sewing training center for women and a nutrition center for underweight babies to attend with their mothers.  There are two security guards at the entrance but, thankfully, are not armed.   As usual the shaded courtyard was filled with mothers, babies and toddlers. Many more waited patiently inside in the large airy waiting room. 

It was already 11 a.m. and Doktor John’s morning clinic had been running for a few hours.  I opened the door hesitantly and entered. He immediately greeted me and began to tell me about 11-month-old baby Willgesta Pierre who needs hole in the heart surgery.  A previous patient, baby  Elie Joseph who at the time was living in the one of the worst camps in PAP, Aviation City  [a shameful reminder of the assault on human dignity and the failures of post earthquake humanitarianism], needed similar treatment. Baby Elie died after her mother failed to get her passport to the Dominican Republic for the operation.   Dr Carroll described Elie’s death as a series of failures including his own. He said, "big mistakes plus little mistakes plus big negligence plus little negligence all adds together and equals death. Just because his parents don’t know how it all works, doesn’t mean people aren’t at fault. And we are all failing the hundreds of thousands of innocents living in the tents now. There is no urgency for the poor. There never has been."

I imagine Elie’s death was foremost in Carroll’s eyes and the need to ensure that baby Willgesta did not die through a similar set of failures.  Repairing a hole in the heart [ventricular septal defect] is just a 15 minute operation but it requires sophisticated medical technology to keep the blood pumping whilst the heart is being repaired, high medical expertise in pediatric heart surgery, and reliable electricity, a combination not present in Haiti at this time.    Willgesta was admitted to hospital in April but needs her surgery quickly.  Already the pressure is building around her lungs and if this continues she will need both lung and heart replacement which is not going to happen.  So now he has to sell the surgery to his local hospital in the US, find a surgeon willing to operate for free [this is the easiest of his tasks] and get visas for baby and mother all in the next few weeks. In his words, "there is absolutely no excuse for this baby to die – ZERO!"

Lunch at the nutrition center for babies


One of the biggest problems in providing appropriate and timely treatment is clinic hopping  Patients go from one clinic to the next often without clear knowledge of the diagnosis and/or forgetting the treatment they received.   The lack of documentation wastes time and patients are retreated for the same problems. With proper documentation, the doctor would be able to see a particular patient has repeated issues and look for an underlying problem.   Willgesta is an example of this.  She has been to five clinics and all the mother has to show is a bag full of payment receipts but nothing has been done for her daughter.  Now she is critical with a fever, sweats and possibly TB, which is rampant throughout Haiti.  How does one begin to understand any of this when the struggle to pay for doctors is pitted against the struggle to eat? Three, four hours spent traveling from clinic to clinic, each time waiting in hope that someone will care enough to do something. 

Earlier I mentioned that the root cause of illness amongst Cite Soleil residents is structural violence – those social conditions which determine ‘who will suffer abuse and who will be shielded from harm‘ and their discriminatory affects. [Paul Farmer]. Let's take as one example the cost of maintaining the 2012-13 UN occupiers which is  $648,394,000.   In contrast the World Bank just announced $70 million for maternal and child health in Haiti. We are told that 1.8 million women, children and vulnerable families will benefit though we are not told the quality and quantity or, more importantly, how much of that money will go towards operational and staff costs.  But it's deeper than that as any improvement in the access and use of health services is of course a positive step, the real cause of illness in Cite Soleil is due in large part to living conditions. Therefore, since the World Bank money will not be used to improve these in any way, then the programme ends up as a bandaid used to cover a bullet wound. 

Sokari Ekine is presently an IRP New Media Fellow in Haiti who blogs at Black Looks