An Open Letter to Parents of CHD Babies

This letter is one I have wanted to write to my parents for years, and hopefully, if you have parents or know parents of CHD babies, you’ll share this with them, too.

Dear Mom and Dad,

This letter has taken a long time for me to write — 33+ years to be exact — but I have a few things I wanted to share with you about being parents of a CHD baby. While I cannot begin to know what it feels like, even being on the other end, as I’ve gotten older I’ve realized how incredible you are (even more than before!) while going through such a tumultuous period of time bringing me safely into the world.

Please know that although it might have felt like it at the time, you’re not alone.

1 in 100 families go through some type of trauma at birth due to CHD complications. When talking to my dad about CHD and my birth, his story — a time when there was much less technology — broke my heart, especially as an adult.

“It was a very hard time for your mom and me,” he told me, adding that after I was taken away to a different hospital for testing and an emergency surgery, he and my mom were left in a shared delivery room with moms that were happily cooing and celebrating their new babies while my parents waited, anxiously, alone — without me, their first child.

“I finally had to ask a nurse if we could get a private room so your mom could have some privacy.” This absolutely broke my heart.

I wish I could have been able to comfort you and tell you everything was going to be OK.

They whisked me away for testing, and sent me in an ambulance to get care at NY Presbyterian. I wish I could have told you that I was in the best hands and would be OK, and to know that a CHD baby birth and postnatal care was just not the same type of entry into the world that most parents expect. As an adult, you truly realize the quiet sacrifices and traumas that CHD parents go through — many without a support network, especially back before technology connected us so much.

It’s not your fault.

There was nothing that you could or should have done differently, nothing that could have been changed for a different outcome. Research shows that CHD happens at random and affects many babies throughout the world. This isn’t your fault.

You’re trying your best…

…even when you feel like the world is against you and wonder, “why did this situation happen to us?” Every cardiology appointment, phone call, testing and monitoring, checking for breathing at night (I know you did it!) — as a parent of a CHD baby, let alone just being a parent of a “normal” child, this fear and stress is incredibly heightened. I know you’re doing the best you can, and always will.

It’s OK to worry about me.

If you didn’t, would you even be a parent? (I kid.) I know you worry, but I promise, I’m OK. And even if I’m not, I will be an advocate for my own health and surround myself with people and doctors that will also advocate and support me.

Science is incredible.

The fact that I’m alive typing this right now at almost 34 years of age when prognoses in the 80s for my condition were poor, is proof. Even since I was a teenager, the amount of research, changes in technology, prenatal CHD research (which wasn’t even a thing when I was born), and surgery updates that have come about are remarkable and awe-inspiring — with the size of Holter monitors as proof (seriously, remember how huge those were in the 80s/90s!). It can only get better from here, know that.

Thank you for treating me as normally as possible — it was the best thing you could have done.

Even our doctor’s appointments as a kid felt fun. We went out to lunch after, we joked, we laughed, and somehow made them fun. I am truly a more well-adjusted person in society who doesn’t treat myself as a victim, but more as a warrior filled with strength, endurance, love, and support needed for my lifelong care.

Thank you for supporting me throughout my life, to the best of your ability. There is no roadmap to this, and even from patient to patient, prognosis, treatment, and outcomes are different.

You have given me the tools and strength to keep going, be strong, and know that I’ll be OK, no matter what the future may bring.

I love you. Thank you for everything.