Nathan, born 2010

Since the moment he was born, our son Nathan has been a wonderful lesson is going with the flow, expecting the unexpected, the amazing resilience and determination a baby can have and most of all, the generosity and kindness in the world.

 

Nathan was originally diagnosed with truncus arteriosus at our 19 week prenatal echocardiogram. We spent the remainder of our pregnancy carefully monitoring Nathan’s health and preparing for a lengthy stay and immediate surgery once he was born. He was born without complication on April 13th, 2010.

 

After careful examination, our amazing team at Yale New Haven Children’s Hospital realized that Nathan’s diagnosis was actually pulmonary atresia, ventricular septal defect (PA/VSD), with his pulmonary arteries being supplied by a single aortopulmonary collateral. Nathan spent the first nine days on earth in the NICU at Yale. Every person we met there was kind, compassionate and supportive.

 

While in the hospital, his team also discovered that Nathan has long QT syndrome, type 1. While this will mean medication for life and limitations on the athletic and extracurricular activities for Nathan, he should be able to lead a fairly normal life.

 

Without using the term “miracle” loosely, Nathan’s heart created a rare, abnormal connection between his heart and lungs, which was the major problem at birth, that allowed him to come home for a couple of months before his first surgery. It meant constant monitoring with machines and almost daily visits to some doctor or nurse, but we got to have our baby at home with us and he got to meet his extended family for a while.

 

During the first year of his life, Nathan had 3 cardiac catherizations and two major open heart surgeries. His first surgery was performed when he was 2 ½ months old. At that time, he had a Rastelli repair which included an 11-mm homograft placed from his right ventricle to pulmonary artery, a pulmonary artery patch enlargement, a VSD closure, and ligation of the aortopulmonary collateral. At thirteen months, Nathan had a conduit revision with a 16-mm Contegra graft and a left pulmonary artery patchplasty. Our hope is that this conduit will keep Nathan’s heart healthy and thriving for a couple of years

 

While the amount and extent of his future surgeries is unknown, we put our faith in God and his team at Yale and go about living our lives with Nathan. Nathan continues to bring joy to us and everyone around him- he’s learning to walk, enjoys eating just about anything and laughs at anyone and anything.

 

Story by Nathan's parents, Jenn & Dan - Connecticut