5 Things Every CHD Mom Knows

I am the mother of a boy who was born looking like perfection, but who quickly showed that his heart wasn't built to keep him alive outside the womb. Fortunately, I am also the mother of a son who was born in a time where technology has advanced enough that surgeons and doctors can create a cocktail of procedures and medications to help him sustain life for much longer than he could have otherwise. That, I am extremely grateful for. I am so happy that my son has a chance, but like any parent of a child in that situation, that will never ever drown out the possibilities, and statistics that surround the child that we love so dearly.

As a heart mom, we carry burdens, and sometimes it would be nice for the rest of the world to be more aware of them.




1. YES, there are corrective surgeries and transplants, but they often come with a ticking clock. These are not a "fix", nothing can change our child heart into a perfectly formed heart original to their body. This is the biggest misconception we hear. That our child is "fixed now" If I could scream how incorrect this is, the entire world would hear me.

2. We have seen babies in similar situations go from great to gone. It haunts us, even on the best days. Our child has been at their lowest level and come out of it, and other children have been doing fine and passed away. Try and remember that there really is no safe zone. You are consistently walking on eggshells with a heart that is not fully functional, dependent on medications, or surgeries. While on this subject, this is why it's so important to be patient and understand of a parent with a chronically ill child when they are picky about hand sanitizer, or when they ask you to stay home if you've had a recent ailment. We just want our babies healthy. Please understand this. 

3. Each of our doctors have to give us a percentage. No matter a doctors opinion, they have to lay all the possibilities out for you. I will be upfront and tell you that I carry that percentage around in my pocket like its a cellphone. Constantly checking it, looking at it, questioning it, and it feels like the heaviest baggage one would ever have to pull through their life. Could you imagine having to seriously ask yourself, "How likely is it that my child will die from this?"

4. We have a guilt that will never go away. Most congenital heart diseases have no proven origin. Its nothing the mother did or didn't do, but that doesn't stop us from questioning everything. That doesn't stop our heart from being filled with remorse and guilt when we see our childs chest open, when we hear them struggling to breathe, or when we see a tube down their throat. We were supposed to create them, and we created them with a defective heart. No, its not our fault, but sometimes its hard not to feel like it might of been.

5. We no longer feel we can relate well to normal parenting.  I have to be honest, some of us heart parents get pretty agitated at the normal parenting complaints, not all of us, but I know at least I do. Your child has a cold, and that's so menial and normal, that it sometimes can be hard for us to sympathize to when our child just had a stroke after open heart surgery. It's not your fault, it's not fair, and it's likely a tad petty, but its how we feel. Some people can't understand that my child can't tolerate what feels like normal weather, or certain activities. Not only that, but if we are talking to someone who isn't educated about congenital heart disease, we sometimes feel like we are talking to a brick wall. I have to say this one time for the people in the back, essential oils will not cure my kids heart. Got it?

This doesn't even begin to touch the serious struggles of having a child with these conditions, but I write this in hopes that friends and family can begin to understand the everyday struggles that we may face.

My heart hurts so badly. So many little lives have slipped away. So many mommys and daddys are spending mothers day, fathers day, and every day with empty arms, nothing to cling to but their memories. It isn't fair. It isn't fair for these children to suffer, it isn't fair for these parents to spend the rest of their lives with a chunk of their heart missing. It isn't fair for parents to have to wonder when they are next. Please remember the burdens some carry, Being the parent of a child with a congenital heart defect is going to be difficult, but you can make it easier by understanding what we may be going through.

*Note - I cannot speak for every CHD parent, but hope to speak for the majority. You are never alone.