When our son Nicholas was 5 weeks old, we brought him and his twin sister Emmy to our pediatrician for what we thought was a routine well visit. Though the twins had been born four weeks early, Nicholas had only been in the neonatal intensive care unit (NICU) for a few days with low blood sugar and jaundice. Both babies seemed healthy and we had no major concerns.
However, as we watched our pediatrician listen to Nicholas’ heart and pulse, we realized something wasn’t right. He told us the pulse in Nicholas’ lower extremities was weaker than the pulse in his upper body. He suspected Nicholas might have coarctation of the aorta and referred us to our local heart center, where they confirmed the diagnosis and immediately scheduled us for surgery at Boston Children’s Hospital. …
Before Maria de la Paz was born, her parents Violeta Gustale and Orlando Cazal learned their unborn daughter had a complex congenital heart disease called hypoplastic left heart syndrome (HLHS).
With HLHS, the left side of the newborn’s heart is so underdeveloped that it cannot pump enough oxygenated blood throughout the body. The standard treatment is a series of three corrective surgeries to re-route blood flow through the heart. The first surgery is performed at birth, the second at six months and the third about two or three years later.
Violeta and Orlando were presented with four options:
- Travel from their home in Paraguay to Boston Children’s Hospital for treatment. The Boston Children’s Heart Center had a 95 percent success rate for the surgeries Paz would need (this was in 2011; today, that rate is 97 percent).
- Go to São Paulo, Brazil, where the best hospitals had a 75 percent success rate for the same surgeries.
- Go to Buenos Aires, Argentina, where surgical success rates hovered around 50 percent.
- Stay in Paraguay and have the surgeries there. Paz could be the country’s first success story, and the hospital would cover all medical expenses.
They made their decision right away. Their daughter would be born at Brigham and Women’s Hospital and treated at Boston Children’s.