Asa, born 2008
At 20 weeks gestation I went to have an ultrasound hoping to find out the gender of my child. They had taken forever and the technician could not tell me anything. They told me I needed to come back the next day to have a cardiologist do an echocardiogram because something was not right with the baby's heart. The next day, for the first time, I heard the words Hypoplastic Left Heart Syndrome. The Cardiologist advised that there might be other problems as well and gave me the rundown of the three choices. My baby was moving inside me and in my mind, heart, and my home state made the first "choice" against the law. Devastated, and clueless about what I was being told, I began to search for answers.
During each appointment, the cardiologist would study the echocardiogram. It seemed that it was very hard to see exactly what to expect with the anatomy of Asa's heart. There was a clue that there was a possible mirror image. Once Asa arrived the echo was a lot more concise showing a picture of a heart located within the right chest cavity (Dextrocardia), pointing to the right so that the right ventricle was on the left and a tiny underdeveloped left ventricle on the right. Asa had an opening between his two atriums that would later be enlarged. His pulmonary artery had patent ductal tissue along with the PDA causing major reconstruction of it. His right ventricle was a double outlet (DORV). So there was a lot of work to do during the Norwood to say the least. Asa had complications including clotting causing his BT shunt to be replaced and then catheterized. He fought hard to get off ECMO and the doctors thought they lost him from his lungs collapsing. Just when I thought Asa was in the clear there was a concern about his stomach being mal-rotated and needing yet another surgery.
Asa survived all of this and suddenly, one day, I saw his first smile. I had been talking to him and spending time with him so he could feel my touch and hear my voice and now he was showing me, maybe he heard me! The doctors at Duke encouraged the contact, playing music, reading books, and I am so glad they did. We went through the NG tube, bottle battle, and trying to over load on calories.
All in all, Asa is thriving. Aside from him having his differences like all of us, his experience has been a testimony of faith, courage, and patience. Having these three things make a miracle!
Story by Asa's mom, Raena - DC