“Stacey, you should get this checked out immediately,” my pediatrician told me after he listened to my then 4-month-old son’s Brandon heart at a routine checkup.
My jovial and chatty doctor had the most serious look I’ve ever seen him have. A good diagnostician, he had a stellar bedside manner with his young patients and parents like me, which made us all adore him. He’s such a personable guy that he’s one of my Facebook friends. So, I knew he wasn’t joking when he said those words.
I turned white as a ghost and started shaking. I’m the kind of parent who brings a long list of questions to a visit. For the first time, I was speechless.
I have two boys, Ethan, 8, and Brandon, now 4. The best way to describe Brandon is that he was born four days late and he has been doing things his way ever since. He walked at 18 months because he just liked being carried everywhere. He potty trained on the late end of the spectrum since he loved wearing a diaper. He lives life on his terms. But that’s just who he is and what I love about him.
Brandon and I somehow made it home that day. I didn’t have time to do my usual exhaustive research of doctors. Instead, I relied on my pediatrician’s recommendations, whoever took my insurance and whatever pediatric cardiologist could see Brandon the quickest.
“Nine times out of 10, these things are nothing,” the cardiologist said at the start of our appointment two days later. And I agreed with him. Yes, Brandon napped a little more than I remembered Ethan doing at that age. Sometimes his lips turned blue after a bath. Other than that, Brandon appeared to be a normal and happy baby. I was convinced the pediatrician was just being cautious.
After a lengthy echocardiogram, even the cardiologist was stunned to discover that B (as we call him) had a heart defect—a hole in his heart plus a valve issue. It had gone undetected during my prenatal visits and our early baby checkups. (The condition may have not developed until he was four months old or was too tough to see or hear early on.) My husband asked a million questions as I sat there numb, in a state of shock.
Fortunately, Brandon’s condition wasn’t life-threatening. He could live with his “bad” heart for years. But it did need to be taken care of eventually. And unlike many other heart cases, he wasn’t feeling the effects of his bad heart at all.
We decided to wait until the spring, when he was about 10 months old, to do the surgery. That way Brandon would be strong enough to recover, but he wouldn’t have to be sidelined over the summer. Plus, we wanted the surgery done before he started walking so he wouldn’t have to relearn that skill.
I spent the months leading up to the surgery in a fog. I read everything I could about his condition, his surgery, the surgeon we had chosen. We spent hours at doctor appointments. My mind was always spinning in circles and fearing the worst.
Cut to the chase: Brandon’s surgery was successful. The surgeon told us that hole was bigger than anticipated but it was closed. And the valve issue was fixed. He had open heart surgery on a Monday and was home on a Thursday. It took him a few weeks but he quickly returned to his happy self. Babies sure are resilient.
Brandon has a scar on his chest marking his battle wounds. It was dark red for awhile. Now, it’s less conspicuous. I rarely notice it’s there when I’m helping him get dressed or as he’s happily streaking through the house.
Cardiologist appointments are less frequent now. We’re returning this winter after being given the all-clear for two years.
I don’t think about those awful days nearly as often as I used to do. Prior to his surgery, I’d glare at his surgery date on the calendar. I let it define who I was as a mom, googling worst-case scenarios and tossing and turning every night. Now, the surgery anniversary comes and my husband—a “dates” guy—reminds me what happened that March day.
When Brandon’s ready, I’ll tell him the story behind his battle wound. And how he’s my little warrior.
Stacey Feintuch is a freelance writer who lives in northern New Jersey with her husband and two boys. And she’s Stacey with an E opposed to this site’s co-founder, Stacy.