In global health, incredibly difficult situations can arise where we’re unable to cure children because we don’t have the equipment or resources needed. Adding to this frustration is the reality that if these children were lucky enough to live in the U.S. or other developed countries, they would have access to appropriate care.
In the spring of 2015, we were faced with a heart-wrenching situation.
While at St. Damien Pediatric Hospital for a cardiac mission, a 2-month-old boy, Gerson*, was diagnosed with Total Anomalous Pulmonary Venous Return (TAPVR). TAPVR means the blood vessels from the lungs aren’t routed to return to the heart correctly, causing a patient to breathe fast, appear blue and have heart failure.
Without surgery, Gerson, wouldn’t survive.
For our mission, we prepared for only “simple” heart surgeries, where the recovery time wouldn’t be prolonged. We didn’t have the resources necessary to repair Gerson’s complex condition.
This bleak reality was emotionally taxing for our Akron Children’s staff. We watched as Gerson’s mother saw 11 other children with surgical heart disease come to the ICU, receive surgery and leave healthy.
She saw the parents of these 11 children have their prayers answered when their child’s cardiac disease was cured. All the while, she knew the surgical team couldn’t cure her baby.
Drs. Ellie Crow and Jared Rubenstein, fellows in palliative care at Akron Children’s, spent many hours providing emotional support to Gerson’s mother while other team members continued to search for options.
Staff pleaded with the mother to eat and sleep, promising to stay with Gerson so he was never alone. The mother was so terrified that her baby boy would die while she was away, she never left his side.
The picture of Gerson and his mother shows an outpouring of love between a mother and her child. However, it doesn’t capture how much Gerson was struggling to breathe. This powerful image depicts the strength of a woman who fought off a constant stream of tears, overwhelming despair and crippling fear with a gentle smile for her baby. It was her way of reassuring her son that she would always be there, loving him.
Haiti Cardiac Alliance (HCA), a non-profit organization that works to match Haitian patients with surgical heart disease with hospitals around the world willing to perform operations, is instrumental in coordinating care for children like Gerson.
HCA works with cardiologists to identify patients with surgical heart disease, facilitates transportation to pre- and post- operative visits, works with the embassy to obtain approval for patients to travel abroad for surgery, and finds surgical options across the globe for critical patients.
Through the efforts of HCA, Gerson was able to get a passport and visa to travel to the Dominican Republic where he received the life-saving surgery he needed.
During a cardiac surgery trip in November, Gerson and his mother came to St. Damien to see the whole team to thank everyone for their efforts. He was doing great – growing and gaining weight, standing and cruising – everything expected of a child his age.
We all looked at him through tears of joy, amazed at how, against impossible odds for a child born in Haiti, Gerson was alive and well, happily waving at us.
It’s stories like Gerson’s that drive the work Akron Children’s does in countries like Haiti and illustrates the important role collaboration plays in creating successful global health programs.
*Name has been changed for patient privacy