Fighting a Congenital Heart Defect: A heart mom’s experience

“Your son has a heart defect. There’s no way we can treat him here. Where do you want to go?”

Those were the words that changed my life. It was October 1994 and my son was in congestive heart failure. I had had 3 ultrasounds, and nothing showed a problem with the heart, but this was in the 1990s and the images back then were not as good as they are today. For the first 10 days of my son’s life I had taken him back to the hospital to Newborn Follow-Up Care. Nurses applied labels like “newborn breathing,” “breastmilk jaundice” and “petite like you” to explain his tachypnea, yellow appearance and the fact that he wasn’t gaining weight.

Before I knew it, I was in an ambulance with my 2-month-old son. We were headed to San Antonio, Texas where I would discover the name of my son’s birth defect. Alexander was born with hypoplastic left heart syndrome – a potentially fatal heart defect. The fact that he hadn’t died already was a miracle. With such heart disorders children usually never survive, but he was a fighter.

After more tests, the doctors were ready to meet with us. What they told me was stunning. How could my baby be alive with so many problems with his heart? I wanted to run out of the room, scoop my baby in my arms and shield him from the uncertain future ahead. Instead I listened to doctors tell us the seriousness of the situation and how, if Alexander were their son, they would take him home to love him for what little time he had left. Four doctors were in agreement on the course we should take.

That wasn’t acceptable to my husband and me. We didn’t care what they had to do, we just wanted them to save our son. Thus, began our journey with congenital heart defects.

Alexander amazed the doctors. He had the fastest recovery time of any other previous HLHS baby. He was discharged just one week after his surgery. We had to stay in San Antonio for two weeks of follow-up appointments. Alexander had another open-heart surgery – which left him with a Fontan heart – eight months later.

I found myself in a precarious situation. I had never cared for a medically fragile child before. I didn’t understand the words the doctors were using or the tests he needed. The surgical procedures were also unfamiliar to me. Therefore, I decided I would have to educate myself so that I could be a strong advocate for my son.

Between Alexander’s first and second surgery I started to put together a book about his heart condition. Unable to find a publisher I self-published the book. Meanwhile, I had sent a letter to a nursing journal my husband subscribed to and the letter was featured as an End Note. I had always wanted to be a writer but I never thought the first piece I would have published would be in a nursing journal nor that the first book I would write would be about a rare heart condition.

Since then I have gone on to create websites, write more books and enter the world of public speaking. I have spoken at conferences all over North America. I have sold books to people on every continent except Antarctica. Suffering from Heart Disorders, children who are diagnosed have no geographical boundaries. It is a worldwide problem.

I have also started a nonprofit organization called “Hearts Unite the Globe” (HUG). The mission of the nonprofit is to empower, educate and enrich the lives of members of the congenital heart defect community. The website is a clearinghouse of information for CHD members but perhaps the most impactful activity HUG currently engages in is the production of podcasts for the CHD and bereaved communities.

The path I have traveled upon has not been easy; however, I have met many wonderful people along the way. My son has grown into a strong, independent man who is a pharmacy tech at our local hospital. Through my publishing company and nonprofit, I have had the good fortune to reach out to others and to make a difference. As bad as CHDs can be, I feel that I have been extremely blessed and look forward to the day when we can find a cure for congenital heart defects.

If you want to read and learn more about HUG, you can visit www.heartsunitetheglobe.com