In September of 2013, I was honored with the blessing of bringing my daughter into this world. She was so perfect – 6 pounds 10 ounces, a head full of dark hair, a strong pair of lungs, all ten fingers and toes and an incredibly complex heart that was perfect in all of its imperfections.
I.S.M. was born with congenital heart defects (CHD), which I learned about during my pregnancy. I went in to find out if I was having a girl or a boy, and came out knowing I had a little girl with, what they called, some sort of “deformity” in her heart. One week later, I learned she had Double Outlet Right Ventricle (DORV), Transposition of the Great Arteries (TGA), a Ventricular Septal Defect (VSD), an Atrial Septal Defect (ASD), and Pulmonary Stenosis.
I researched everything I could about these defects … often times causing me to cry myself to sleep. So much of the information was scary, made me feel defeated, even more scared and honestly depressed me. The doctors prepared me for the worst, telling me I wouldn’t be able to hold her when she was born and that she may require open heart surgery right away. They told me she would most likely require oxygen and medications, since something as necessary as breathing would be too difficult. It all depended on how she chose to present herself at birth, they said.
As a mother, I felt like a failure. I felt something I had done during my pregnancy had caused this. Were my showers too hot? Was eating all this organic food actually detrimental? Had the glass of wine I drank before knowing I was pregnant, caused this? I felt like it was MY fault..I just KNEW it was. And here is her dad feeling like it is his fault, because his older brother died of a congenital heart defect in the 70’s. When we learned of her defects, we made the decision that we were going to do everything we can to make sure our daughter is happy, healthy and lives a long life … beyond what we vowed when we first learned of the pregnancy, but before we knew of her CHD.
Moms … Dads … it is not our fault. Stop beating yourselves up! I know, I know … a lot easier said than done. But, we do all we can for our CHD child(ren), and they know that. We keep them in their bubbles, disinfect their surroundings, pump them full of healthy food, shuffle them to their doctors appointments, give them plenty of exercise while making sure they don’t push themselves too hard. We worry, we watch them like a hawk, we plan ahead and we pray. But parents, we need to be sure we aren’t worrying TOO much, stressing too much, or wearing ourselves thin mentally. We need to be sure we are supporting ourselves, as well.
That is why I decided to write this article for you. I have had several friends reach out to me after they learned of their child’s CHD, asking me for support and if I knew of any support groups for their child’s specific defect – Asking me what I do to not stress as much. And let me tell you, the stress never goes away – how we manage it all, is what can change. There are 35 different types of congenital heart defects, and 1 in 100 babies are born with one. Yet many people don’t know much about CHD, and often times think after surgery, our children are “cured”. But CHD is never cured. It is a lifelong medical condition that will require constant medical supervision. And for that, we all need to be better informed and supported.
Support for Families
- Mended Little Hearts – This is my number one favorite group. They are an incredible organization, providing webinars, resources and support to families with children with CHD. You can reach them at mendedlittlehearts.org
- Little Hearts – As described directly from their site, membership consists of families nationwide who have or are expecting a child with a congenital heart defect. Visit them at littlehearts.org
- Support Network – http://supportnetwork.heart.org/home
- Pediatric Congenital Heart Association – http://conqueringchd.org
In addition to these sources, ask your child’s cardiologist if they know of any local support groups. You can also contact your local Children’s Hospital for the same. Most importantly, don’t forget you have those people in your life who may not necessarily “get it”, but they love you. And they want to get it, and be there for you.
If you’re feeling overwhelmed, or just need somebody who knows what you’re going through, please reach out to these sites. Or, please feel free to reach out to me! We all need support, just as we support our children.