CHD Parent: You are not Alone

When I was a little girl, I always dreamed of having a husband, living in a house and having children. I never thought about my child having a health issue. When I was 21 weeks pregnant with my first child, my fiancé and I learned that the right side of our unborn baby’s heart did not work as it should and when she was born she would need open heart surgery; that is if she even survived.

On October 21, 2013, I delivered a beautiful girl that was sent to Nationwide Children’s Hospital, just hours after being born. We had a team ready that knew the extent of Avery’s heart issues and were prepared to care for her. At only one week old, Avery had her first open heart surgery. As first time parents with a baby with Congenital Heart Disease, you have no idea what to expect. The doctors and nurses did an amazing job of caring for her and explaining everything we needed to know.

Avery’s heart condition is very complex. Her main diagnosis is Hypoplastic Right Heart Syndrome, which means that the right side of her heart which sends blood to the lungs will not function like it should. The left side of her heart now has to do the work of the right side as well. As I have learned at my stay at Nationwide Children’s, the doctors and surgeons do an excellent job researching and discussing what is best for babies with heart problems. I thank these people every day for the work they do. They will never understand how much we are grateful to them for helping Avery.

Throughout our 49-day stay at Nationwide Children’s, we experienced cardiac arrest, belly and liver issues and feeding obstacles. Avery also had to get a stomach tube known as a G-tube to help her eat and receive her medicines. We had to learn how to change her G-tube bandage, measure and distribute medicines, record Avery’s heart rate and oxygen level, and work her feeding pump. We have a strict feeding and medicine schedule that keeps life busy and interesting.

As a mommy or daddy of a CHD baby, the rest of your life will always be a little different compared to parents with a healthy baby. We will have more doctor visits, more medications to give and more reason to be protective of that child. There are many ways to raise awareness for CHD. This disease is becoming very common and most people are not aware that any baby can develop a heart disease.

Hopefully, my story will not scare or upset you as a family member who has a child with CHD. It is true that Avery’s baby story is not as normal as others, but these babies are just as easy to love. Just remember that there are many parents who understand what you are going through and the resources on the heart floor can really help. Do not be afraid to talk to other parents or ask as many questions as you need. If you would like to hear more details about Avery’s journey, feel free to look up Avery’s Amazing Heart on Facebook.