The Mighty Logo

The Importance of Connecting With Other 'Heart Parents' – Even Through Tragic Moments

As the mother of a child with a congenital heart defect (CHD), I consider myself very fortunate to have found a community of parents whose children also have a CHD. My husband and I have gotten to know many CHD parents and we consider them friends. I have found it creates a unique bond when I find others who medically “speak the same language” I do.

When our children face a challenge, in addition to our families and friends, we seek out our “heart friends” for support and advice. Through blogs, posts, texts and calls, we offer comfort and guidance, and cheer on each other’s heart warriors. We share progress, setbacks and we commiserate. More often than not, even the setbacks lead to our children being released from the hospital or showing improvement in their conditions.

But unlike fairy tales, some CHD stories don’t always have happy endings. Sometimes they end in the most tragic way possible. While I have been very, very scared for our son and we don’t exactly know what his future will bring… to date we have been incredibly fortunate. Our son has come back home from each of his four open-heart surgeries and numerous additional procedures. He made it through a paralytic seizure less than two days post-op, where he stopped breathing for an uncertain amount of time. A medication added two years ago is credited for alleviating the need for a fifth surgery, which had the same chance of helping him as it did further weakening his heart and placing him on the transplant list.

On the surface, you wouldn’t know what he has been through or may have to go through. I count my blessings for that… yet my heart breaks for those who aren’t able to say the same thing. I have wept for children I have never met. And I will never forget meeting an expectant mother, whose son had the same CHD as my son, hypoplastic left heart syndrome. With the best of intentions, I looked into her tear-filled eyes and told her I knew her son would be a fighter. I told her she had to believe her son would make it through. Tragically, her son didn’t make it. I choose my words of support much more carefully now.

I have gotten to know parents, in person and online, who, along with their child, have fought and fought and still lost their battle. I can’t say I know what it feels like to be in their place. Selfishly, I hope I never do. I know what I feel as a member of their CHD community can’t even compare to what they must feel. It’s not just words when I let them know they are in my thoughts, but I feel guilty when my actions haven’t always expressed the same sentiment. I haven’t physically been there for as many people as I would like to be.

Perhaps it is because of the belief that “it won’t happen to my child… it can’t happen to my child,” consumes my thoughts when a loss occurs. Even though as the parent of a medically fragile child, I have accepted the fact that the unimaginable can happen to us. In a way, it already has happened to us. What is to prevent it from happening again?

Perhaps it is survivor guilt – which is a real thing. I am so thankful my child is doing well, but I still find myself questioning why another child was taken and mine wasn’t.

I feel certain it reminds all of us heart parents just how much we wish CHD didn’t exist.

I have since chosen to embrace the chance to get to know other heart families. To me, it makes such a difference to know my husband and I aren’t alone. For those who have suffered a loss, I know there are no “perfect words.” But never forget your CHD community is here to support you, now and in the future.

If you are also a member of the CHD community, I encourage you to acknowledge the loss, extend your sympathies and offer your support.

Photo credit: noipornpan/Getty Images

Conversations 6