Jennifer Corcoran Conway shares her story of being the mother of a child born with a congenital heart defect, 5-year-old Aedan.
Your baby has a congenital heart defect called Hypoplastic Left Heart Syndrome, and if he doesn’t have open heart surgery in his first week of life, he will die.
These are the words that stopped my world spinning on its axis and flipped it on its head. Two weeks prior, at my 18-week growth ultrasound, my OB/GYN told me that she couldn’t see all four chambers of his heart, and wanted a specialist to do a fetal echocardiogram and take a closer look. It only took him about five minutes to change our world forever.
In my 20th week of pregnancy, my son was diagnosed in utero with Hypoplastic Left Heart Syndrome, an extremely rare congenital heart defect, in which the left ventricle does not develop, or does not develop properly, leaving only one functioning ventricle, or a three chambered heart. Colloquially, people say that he has “half a heart.” But nothing could be further from the truth.
Prior to his diagnosis, I had no idea what a congenital heart defect was. I learned that congenital heart defects are the number one birth defect in children – 1 in 100 babies is born with a congenital heart defect. I also learned that we don’t really know what causes them. That didn’t stop me from questioning everything I had done or didn’t do prior to, and during, my pregnancy. The doctor always told me it wasn’t my fault, and in my head I accepted that, but I don’t think my heart ever did.
His first open heart surgery was at four days old – so tiny on that big gurney, with tubes and wires running everywhere. I didn’t get to hold him until he was 12 days old. His second open heart surgery was at six months old. A different kind of hard because we knew him now and had to watch the questions and pain in his eyes, and not be able to really explain to him what was going on. His third, and, God willing, last, open heart surgery was just after his second birthday. This time he could tell us he hurt and ask us questions that we still couldn’t fully answer for him.
By the age of 2, Aedan had gone through three open heart surgeries and three cardiac catheterizations. I had handed him off to his doctors six times, never knowing if he would come back to me alive. The oldest survivors with his defect are only in their mid-thirties, so we honestly do not know what his future holds.
But through this journey I have learned so much. The true meaning of gratitude. The real value in a second, minute or hour. We revel in every new accomplishment, as we know the next one is not promised to us. Every holiday, every milestone, is never taken for granted – every day with him was, and is, truly a gift and a miracle. Every day we learn the true meaning of the words miracle, thankful and blessed.
And through my son’s strength I found a strength in myself. A refusal to give up or give in, and a resolve to persevere – not for me, but for him and others like him. In his short life, Aedan has lobbied for passage of the Pulse Ox Law in New York, raises awareness and funds for research, development and treatment of congenital heart defects, and brings joy and a smile to every single person he meets. I am in awe every day of his strength and his will to live. He is truly my inspiration, and every day, my Hero.