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6 Things You May Not Know About Moms of Kids With Congenital Heart Defects

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My journey as a “Heart Mom” began in 2010 when our daughter was born with a serious congenital heart defect (CHD). Within hours, she was 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 son. All prenatal scans showed a healthy heart, and we were thrilled. 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. My journey continues.

The journey of a Heart Mom is filled with ups and downs. Unless you have been there, you probably don’t know what it’s like. In honor of American Heart Month, which concluded recently, I thought I would take some time to try to explain what this is like from my experience. Below are the top things I feel you should know about being a Heart Mom.

1.  There are a lot of us. 

CHDs are the most common birth defects. Approximately one in 100 children is 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. They could be a parent, grandparent, sibling, friend or even have a heart defect themselves. I have learned that in my relatively small group of 164 Facebook friends, there are two other Heart Moms. I did not know how common this 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. As cliche as it sounds, I have thought “Why me?” It was really bad shortly after my daughter was born. It wasn’t fair. We are good people. Why was this happening? 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. I couldn’t have the experience I was “supposed” to have. 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 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 can “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 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. 

My children’s congenital heart defects are lifelong. There is no “cure.” Even if your child doesn’t need any more procedures, there will always be cardiologist appointments that will inevitably dredge up some old memories and 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 2016, she is still doing well and has surpassed the doctors’ estimate of when surgery would be needed. We were told 18 to 24 months, and we are now at 37 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 six months. At this point, we don’t know if he will need medical intervention or not. The waiting can be 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. She wakes up each day smiling like it’s Christmas morning. 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 our children 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 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 truly “gets you” can make all the difference.

mom looking at baby in hospital
Mia and her child.

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Originally published: March 2, 2016
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