Three Things I Wish I Had Known When I Became a Heart Mom
Nobody hands you a guidebook when your child is diagnosed with a congenital heart defect.
You get medical information, care plans, surgery schedules. You get doctors who are doing their absolute best to prepare you for what is coming. But the emotional landscape of becoming a heart mom, the things that will keep you up at night, the thoughts that will creep in during the quiet moments, nobody can really prepare you for that part, even though they try.
I have been a heart mom since late in my third trimester, when we found out unexpectedly that Meadow’s heart had not formed the way it was supposed to. And in the years since, there are three things I have come to understand that I wish someone had been able to hand me in those earliest, most terrifying days.
One: Don’t Put Your Child in a Box
When you receive a diagnosis like Tetralogy of Fallot with pulmonary atresia, your brain immediately starts trying to make sense of it. What does this mean for her life? What will she be able to do? What won’t she be able to do? You start building a picture of what her future looks like, and so much of that picture is shaped by fear.
I understand that impulse completely. And I want to gently ask you to resist it.
The truth is that there is so much uncertainty in a CHD diagnosis, and uncertainty cuts both ways. Yes, there are hard things ahead. There will be surgeries and appointments and moments that are incredibly difficult. But there is also so much that you simply cannot know yet. So much possibility that has not revealed itself. So much that your child will show you about what they are capable of, if you leave room for them to show you.
When we put our children in a box based on a diagnosis, we often do it out of love. We want to protect them. We want to be realistic. But that box can quietly become a ceiling. And these kids, heart kids especially, have a way of blowing right past every ceiling you thought existed.
Leave the box empty. Let them fill it themselves
Two: Throw Out the Statistics
I know statistics feel like solid ground when everything else feels uncertain. Numbers are concrete. They give your brain something to hold onto. But I want to tell you something important about the statistics you are going to encounter as a heart parent.
They are being rewritten every single day.
The field of congenital heart care has advanced in ways that are nothing short of extraordinary. Procedures that did not exist a decade ago are now routine. Outcomes that were once considered impossible are now expected. The data that was collected even five or ten years ago does not fully reflect what is possible for your child today, and it certainly does not reflect what will be possible for them ten years from now.
Meadow is alive because of advances that came before her. And the children who come after her will have options that do not yet exist.
Statistics are a snapshot of the past. Your child is living in the present, moving toward a future that is still being written. When a number tries to define what is possible for your child, remember that someone, somewhere, is working right now to make that number obsolete.
Three: It Was Not Your Fault
This one is the hardest to write, because I know that reading it and truly feeling it are two very different things.
Someone probably told you early on that there was nothing you could have done. That this was not caused by anything you did or didn’t do during your pregnancy. That congenital heart defects happen, and they happen to the most careful, most loving, most attentive mothers in the world.
And some part of you probably nodded and filed that information away and then went right back to the quiet, relentless question: but what if it was?
I know that place. I lived in it for a long time.
What I want to offer you is not another person telling you the facts, because you already know the facts. I want to offer you permission to keep coming back to them. Permission to remind yourself, as many times as you need to, that your child’s heart formed the way it did long before you had any ability to intervene. That love does not have the power to cause this, and love does not have the power to have prevented it either.
You did not do this. And you could not have undone it.
What you can do, and what you are already doing by simply showing up every day, is love your child forward into everything that is still possible for them.
That has always been enough. It will always be enough.
If you are a newly diagnosed heart family and need support, some wonderful places to start are Every 100th Heart, Conquering CHD, and the Children’s Heart Foundation at childrensheartfoundation.org.
