Helping baby Hearts

 EIAD's story

Eiad was born in Sudan and diagnosed with cyanotic congenital heart disease in the newborn period. His cardiac anomalies included pulmonary atresia with a ventricular septal defect (PA/VSD), which results in mixing of deoxygenated and oxygenated blood. There is one opening between the top to chambers of the heart as well as special vessels present during fetal life that allow diversion of oxygenated blood coming from the mother to get to the vital organs of the fetus. In circumstances like Eiad’s, the infant survives only because some of those persist and can direct blood to the part of the circulation that is blocked. There are times they remain open for a prolonged period of time but most often they eventually close. If that had occurred Eiad would not have survived.

Unfortunately, due to the ongoing war and a lack of pediatric cardiac surgical centers in Sudan, his family had no way to get him the surgery he needed. The financial burden was another major barrier; his parents simply couldn’t afford treatment or to travel to the places where treatment was possible. 

When Eiad was about 13 months old, his mother made a brave decision; leaving her husband behind in Sudan, she brought Eiad and his older sibling to Egypt all by herself, hoping to find a hospital and doctors that could provide Eiad with the care he needed. It was during their early days in Egypt that they met someone who worked at Nile of Hope Hospital, a place that offers free pediatric cardiac surgeries in the country. That encounter changed everything. Eiad was evaluated and placed on the hospital’s waiting list. But the list was long, and the wait was over 18 months. 

During that time, because of his cardiac defects, he suffered from failure to thrive (poor weight gain), which occurs due to congestive heart failure. The symptoms in infants are different from that of adults, and include increased calorie expenditure and difficulty feeding due to rapid breathing and diaphoresis (sweating), with any excitement, agitation or during feeding. 

Due to the type of heart defect Eiad had, it was necessary for the doctors and nurses from Nile of Hope Hospital to collaborate with doctors from Cairo and CardioStart, who were there to guide and support the local team throughout his stay, which finally occurred this summer.  Eiad was one of only a 18 patients selected for surgery during the mission, due to the time limitation of just one week.  It was extraordinary that he had survived for so long without having any surgical intervention and despite having low oxygen saturations and difficulty getting enough nutrition to compensate for the energy demand on his heart, he was incredibly resilient. Just three days after surgery, he was up and walking. He was no longer blue; nor did he breathe fast or work hard to breathe.