6 Things You May Not Know About Being The Parent Of A Child With A Congenital Heart Defect

My life changed on Christmas Eve 2010. That is when our daughter was born with a serious congenital heart defect (CHD) and when my journey as a Heart Mom began.

Within hours of her birth, our baby girl was taken from our hospital’s NICU and transferred to a cardiac intensive care unit in a children’s hospital in another state. She spent her first 66 days of life in the hospital, and by the time we got to bring her home, she already had one open heart surgery under her belt.

By 8 months old she underwent her second open heart surgery, and by 20 months, we were told it was time for a third. Luckily, we found a doctor who was able to do a procedure that would buy us time before another surgery was needed. Today, at 5 years old, she is still doing great, although we know surgery is in her future.

In 2015, I gave birth to our second child, our son. All prenatal scans showed a healthy heart, and we were overjoyed and relieved. However, at 2 months old, we found out that he, too, was born with two congenital heart defects. Although not as serious and emergent as our daughter’s, they are CHDs nonetheless. And so our journey continues.

The journey of a Heart Mom is filled with ups and downs. Unless you have been there, it is difficult to know what it’s like. Below are the top things you should know about being a Heart Mom.

1. There are a lot of us.

Congenital heart defects are the most common birth defects. Approximately 1 in 100 children are born with some form of CHD. That’s a lot. That means that most likely someone in your group of Facebook friends is affected by a CHD. Possibly more than one. It also means that many people reading this right now are affected in some way by a congenital heart defect. They could be a parent, grandparent, sibling, friend, or even have a heart defect themselves. I did not know how prevalent this condition was until it affected my family.

2. I get angry sometimes.

Although I’m not proud of it, I get mad sometimes when I think about the congenital heart defects that affect my children. There are times when I have thought, Why me? These feelings were most intense shortly after my daughter was born. I felt angry — it wasn’t fair this was happening to my baby, and I felt cheated. I could not hold my daughter at all until she was 5 days old because of the ventilator, tubes, and wires. I could not nurse because she needed to be tube fed to save her energy. This was not how it was supposed to be. As time has gone on, these feelings have been much less frequent, but I must admit they still flare up at times.

3. We have an unspoken, unbreakable bond with other Heart Moms.

I am very thankful that I know some Heart Moms in my already-existing circle of friends. It helped so much when I discovered I wasn’t alone. There are so many unique and complicated feelings that go along with having a child with a heart defect. Although I am truly and forever grateful for the support of my other friends, there is no one who will “get you” like another Heart Mom. They understand how you feel without you having to explain the intricacies of your emotions. They know the fears that you are too scared to verbalize. They just get it. When I can’t express my feelings with words, I am grateful to know I have people who understand anyway.

4. The journey is never over.

Congenital heart defects are lifelong. There is no “cure.” Even if you child doesn’t need any more procedures, there will always be cardiologist appointments that will inevitably dredge up some old memories in addition to new fears. As I said earlier, my daughter had a procedure done in 2012 that delayed the need for her next open heart surgery. Now in 2017, she is still doing well and has surpassed the doctors’ estimate of when surgery would be needed. We were told 18–24 months, and we are now at 56 months and counting. Because of this, there is always a running clock in my head knowing there is more to come. With my son, we are in wait-and-see mode until his follow-up appointment in three months. At this point, we don’t know if he will need medical intervention or not. The waiting is often the hardest part.

5. Our children are our heroes.

Our children are amazing. My daughter has gone through more in her short life than many adults ever do, and she is still the happiest kid you can imagine. She barely cried as a baby despite everything. Our children are resilient, and they are fighters. If anyone is an inspiration, it is our Heart Heroes.

6. We wouldn’t change a thing.

Of course, we would do anything to take away any pain or struggles that our children might experience, but they are in our lives for a reason. My children have changed me and made me a better person. They have taught me so much about courage and strength and love. They have truly made my life and my heart complete. I think they are perfect, and I wouldn’t change them for the world.

To all the other Heart Moms and Dads, and parents of children with any serious medical condition, you are not alone. No matter your specific situation, there are people who are where you are and who understand. There are people who truly do know how you feel. Don’t be afraid to reach out for support when you need it. This is not an easy journey and having someone who really “gets you” can make all the difference.