“We need to talk about your baby’s heart.”
“We’re not sure, but we think there is something wrong with your child’s heart.”
“Your baby has a severe congenital heart defect.”
Once you hear these words, you’ve joined the heart parent club. Here is what every heart parent will tell you:
Welcome; we’re so sorry you’re here…but we will always be here for you.
This week is Congenital Heart Defect Awareness Week. Coincidentally, it’s also the week where decorated snowboarder Shaun White competes again at 35 years of age on the world’s biggest stage. You’d have to live under a rock to not hear of his accomplishments, back when he was known as the “Flying Tomato,” and how he has matured into a well-spoken athlete any country would be proud of.
What do CHD Awareness and Shaun White have in common?
EVERY heart parent knows the answer to this question, because when we were told that our precious child has CHD, we started Googling for answers, for knowledge, for hope. And what many of us find in our feverish searching, is that Shaun White, this amazing athlete, has a critical CHD just like so many of our kids. Shaun has survived two open-heart surgeries and, obviously, is thriving.
Congenital heart defects…it’s an ugly phrase. When uttered, it’s often greeted with sad eyes, slight frowns, and tilted heads. It’s not fully understood, but most know that it’s scary and seems rare. It’s barely discussed in the popular pregnancy books despite it being the most common birth defect.
CHD affects approximately one in 100 births. 25% of these CHDs require surgery, as in, if you want your child to live, you sign up for open-heart surgery right away. I have no idea the details of Shaun White’s birth and subsequent surgeries, but as a parent of a daughter with a very similar CHD, I can imagine the emotions his parents felt as their lastborn was diagnosed with a life-threatening disease.
Like his family, my kiddo with CHD is the lastborn. Our other kids are super healthy (thank God), active, boisterous. My daughter has never been treated with kid gloves; her brothers were too young to clearly remember her rough start. She’s “one of the gang,” and I would have it no other way. Her brothers came to visit her in the ICU, where they watched Disney movies together and fought over the remote. She took her first steps at 14 months (just WEEKS after her third open-heart surgery, as her proud mom will always tell) while her brothers cheered her on.
Mainly, I’m writing this for the new heart moms, for those facing this earth-shattering diagnosis and who don’t know which way is up yet. You’ll do your research, you’ll see the stats, you’ll have the long talks with the cardiologist, the surgeon, the pediatrician. And more than likely, in your late-night internet searches, you’ll come across a familiar athlete who is well-known for his abilities…not for his challenges.
Some people criticize that he hasn’t been more involved in CHD advocacy, but I see it as incredibly hopeful for kids with CHD. Here is this person who had open-heart surgeries and grew up with parents who didn’t let that limit him (AND I KNOW THIS IS A PRIVILEGE NOT ALL HEART PARENTS HAVE). He never knew it was “special” or “amazing” that he thrived at a sport, let alone one at HIGH ALTITUDE (cue the heart parents swooning). He just lives his life, which is basically what we all want for our own kids. Let’s do what we can to ensure our kids live their lives—and we can be the ones to do the advocacy. It’s their choice if they want to join us in the future, right?
No matter how Shaun does in Beijing, there is a whole legion of fans who don’t even care, because he’s already provided a ton of hope for a generation of kids growing up and thriving with critical CHDs.
{Read more about our CHD journey: I Don’t Know How You Do It :: Parenting a Medically-Complex Child}
