Lessons Learned as a CHD Mom

1. As a mom-to-be of a prenatally diagnosed heart warrior, the anticipation of what comes next can be harder than labor itself. We didn’t know it he would require immediate surgery, or be able to come home with us first. The first words out of my mouth were “is he okay?!” not “can I hold him?” or “let me see him.” The fear was so palpable, I remember just guarding myself - bracing myself to have him whisked away to surgery.
2. Even if those moments after delivery aren’t the bonding ones you expected, you WILL bond with your child. It will not ruin anything if your first feelings were fear and stress, the love you have for your child will be there and will be so strong.
3. Handing him over to the surgical team ties with seeing him in the Cardiac ICU for hardest moment. Saving goodbye, but then seeing him after, were both gut wrenching in their own ways. Nothing can prepare you for this, but just be ready.
4. From the outside, without any reference to CHD or “heart warrior”, you’d have no idea that my little guy has anything abnormal about him. He’s super busy, curious, and opinionated - a typical toddler. But underneath it all is a kiddo who’s used to EKG’s & echos, letting cardiologists poke & prod every few months, going in and out of appointments, seeing countless specialists, and already survived open heart surgery.
5. CHD doesn’t define him, but yes, it has shaped all of us in these formative years. That’s okay.
6. Being in a heart family is about facing your fear of hospitals because you know that’s how your child gets a chance to thrive. It’s about learning all things cardiology so you can truly understand. It’s managing appointments, and specialists, and obsessively tracking everything. It’s about keeping your kid in a bubble when you need to, and ignoring the judgement that comes with it. It’s about becoming passionate about advocating for your child, and for every other patient out there like him. But it’s also about savoring the little moments, feeling relief (and exhaustion) at the high levels of energy, and counting your blessings even on the hardest days because you have a child that reminds you every single moment what truly matters.
7. Something I never realized until I experienced it was that having a cardiac kiddo doesn’t just mean having a cardiologist. There are countless other members of the care team that help ensure your child thrives. The various perspectives can get overwhelming at times, so it’s important to learn to trust your gut and advocate for your child (and yourself).
8. I wish I understood what this journey was like so I could’ve better empathized with those who have walked this road before me. I didn’t get it, but now I do. I wish I could turn back time and be a better support system, but hindsight is 20/20 and it’s what you do with what you learn that matters. So now I want to make sure the families of 1 in 100 babies know they’re not alone.
9. CHD is the most common birth defect, with 1 in 100 babies being diagnosed. Not all are diagnosed prenatally, some find out after birth with special tests that are run for all newborns, others find out years later. Either way, CHD is severely underfunded and deserves so much more awareness and support.