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Posted by Dr. Sushrut Jangi June 14, 2013 12:00 PM
The Hospital St. Nicolas, where Rolensky spent four months receiving oxygen therapy, is a public hospital in Haiti that serves much of the province of Artibonite. Under the auspices of Zanmi Lasante, the sister organization of the Boston-based NGO Partners In Health, the hospital charges about 50 Hatian Gourdes (or about $1.25) for pediatric consultation with nearly all medications covered by this fee. Such low costs attract families from throughout Haiti - and furthermore - that fee is waived for children under five, HIV patients, and families who are unable to pay.
When Rolensky returned to the Hospital St. Nicolas from Cange, Sara Gonzalez, a pediatrician who shares the same global health fellowship as Chris Carpenter, awaited Gerdline and Rolensky's arrival. When she was told what Dr. Smith had found on the echo, she wasn't sure what to think.
Back in Cange, Dr. Smith had placed the echo transducer on Rolensky's fontanelle, an area of a baby's head where the bones of the skull haven't yet completely joined together. By looking through the fontanelle, Dr. Smith was able to get a look at Rolensky's brain. "There was a very large free space on the echo that lit up like a Christmas tree," Dr. Smith said.
This area in Rolensky's brain is called a Vein of Galen malformation - a kind of abnormal dilation where lots of arteries converge, creating an abnormal pocket of blood before the veins drain it away. "Because of the large amount of pooling blood, the malformation acted like a suction cup, pulling up blood from the heart," Dr. Smith says. Since so much blood is lost to filling up this space, the heart has to work extra hard. Over time, this causes pulmonary hypertension and shortness of breath, and ultimately, poor feeding and malnutrition.
Sara Gonzalez had
heard of the Vein of
but like many other
physicians, did not regularly associate the rare condition with pulmonary hypertension. What she did know was that fixing Rolensky probably meant a very complicated surgical repair to the malformation, a solution that was unlikely to be found in Haiti.
So she reached out to a special group at Boston Children's called the Vascular Anomalies team who perform surgeries for children who have structural problems in the vessels. After they reviewed Rolensky's case, Sara thought they would recommend palliative, or end-of-life care, since the outcome of children with this condition is very poor. But that's not what happened. "The team thought he was a good candidate for surgery and wanted him to come to Boston," Gonzalez said. With the help of a medical student, Anne Beckett, Sara set Gerdline and Rolensky up for their first trip out of Haiti to the United States. She took a passport photo with her iPhone and ordered an oxygen concentrator for Rolensky's flight. She bought sildenfil - Viagra tablets for the pulmonary hypertension - at a drugstore down the block. "Anne and I got some strange looks while buying it, I'm sure," Gonzalez says.
When Gerdline and Rolensky reached Boston Children's, he was taken into the hands of Dr. Darren Orbach, a calm, experienced interventional radiologist. "The Vein of Galen malformation can either be very simple or very complex, depending upon its architecture - his was more complex," Orbach explains. He reviewed his strategy for the procedure to me: since the malformation is supplied by lots of arteries, called "feeders," the goal is to close these feeders without harming the rest of the brain. Using metal coils or a viscous glue, he can close the largest feeders to prevent blood from filling the abnormal space, effectively closing down the vein of Galen malformation and allowing blood to travel to the appropriate parts of the brain.
Rolensky was intubated and then taken into the procedure room on May 4th. "I closed the largest feeders on the right and left side," Orbach says.
After closing the feeders, the malformation
closed down, barely filling with blood. Suddenly, vessels in Rolensky's brain that had received only a trickle of blood now blossomed on the CAT scan. The malformation was effectively closed.
"He made rapid progress in front of our eyes," says Dr. Mary Mullen, a cardiologist who helped care for him in Boston. "He was weaned off oxygen and started to be able to eat solid foods and clearly became stronger." Tracking Rolensky's weight, he has now reached an almost normal size for his age. His shortness of breath was gone.
Just a couple of weeks ago, Rolensky celebrated his first birthday. When I touch his hand, he grasps my finger and glances up at my face, his eyes full of the kind of curiosity any one-year-old shares. Gerdline lets the interpreter, Nadege, take Rolensky into her lap. Like Nadege, many physicians, nurses, social workers and other health-care professionals have played a role in saving Rolensky's life. Showing you his photograph and telling his story is important because it illustrates how medicine, at its best, can placate human suffering. We are much better at responding to individual stories than processing numbers. But in truth, there are thousands of children like Rolensky in Haiti who do not have his outcome. Many children in the same hospital where Gerdline first brought him blue-skinned and short-of-breath, die of congenital heart disease, cholera, and malnutrition - children whose lives could be saved if resources are appropriately channeled.
Even Gerdline recognizes the difficult reality she'll face returning to in Haiti. "I'm not tempted about going back," Nadege says, interpreting Gerdline. "I have to go." Nadege clarifies what she means: Gerdline wouldn't go back to Haiti if she had a choice. She worries too much about Rolensky's future there.
Chris Carpenter agrees. "Mom doesn't have the food security, she doesn't have the resources or the family supports." However, he is hopeful for Rolensky. "He'll see Sara [Gonzalez] in outpatient clinic. And if he continues to have persistent pulmonary hypertension, we'll bring him back."
Carpenter is optimistic that relationships between American doctors, volunteers in Haiti, and Haitian doctors can help support medical care for Rolensky and other children like him, as long as medical systems in this country continue to make global health a priority.
"Have you seen what Rolensky learned the other day?" Nadege asks me.
I shake my head.
"If you say hallelujah, Rolensky raises his hands above his head." He turns towards us at the mention of his name.
"Rolensky!" Nadege says. "Hallelujah!"
A moment later, he holds up both of his arms.
If you are interested in donating to support care for children like Rolensky, please visit Partners In Health (www.pih.org).
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About the authorSushrut Jangi is an internist at Beth Israel Deaconess Medical Center and an editorial fellow at The New England Journal of Medicine. More »
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