BAV is Hereditary; The Day My Boys Got Their Hearts Checked

October 27 is a day I’ll never forget. After everything I went through this year, after finding out I had a congenital defect that went undetected my whole life, and that it was hereditary, I knew one thing: both of my boys needed to be screened as soon as possible.

BAV is hereditary, and because of that, we were put on a wait list for pediatric cardiac screening. We were told it could take a few years to get them tested, but because they were younger (9 and 7 years old) it wasn’t a concern. That’s easy to say when it’s not your kids and you’re not the one who might have passed this disease onto them. Eight months went by with no updates. Then, out of nowhere, I got a phone call at 10:00 a.m. asking if I could have the boys at the clinic for 2:00 p.m. that same day. Without hesitation, we were there.

Honestly, I thought it was just going to be a quick meeting with the doctor to discuss what was to come, I didn’t realize it would be the full cardiac workup right then and there. But the moment we walked in, we were met by an incredible team that had flown in from Edmonton; the doctor, the nurse, the ECG tech, and the echo tech. They were all amazing; patient, kind, gentle, and so good with the boys.

Zach and Jake each had an ECG, an echocardiogram, and a full assessment. They went through the exact process I did when I first learned something was wrong with my own heart, but they got everything in one shot, which I can’t say the same for me. Watching your kids get hooked up to the same monitors and machines that you did does something to you. I was on the brink of tears for a few hours while we went through all the testing, but still playing the joking supportive dad so the kids didn’t get upset or scared.

It’s not a short process to get this all done for two kids at once, but the boys were great! After a few hours of testing the doctor walked back in with the results.

Neither of my boys have BAV. No narrowing, no regurgitation, no congenital valve issues, no red flags at all. Their hearts are healthy.

I wanted so badly to cry in that moment with relief, but again, I didn’t want to scare or upset the boys. But trust me, when I was alone, I bawled and thanked God.

As a dad, you carry your kids in ways you don’t always talk about. You want to protect them from everything; you want to take every hit so they don’t have to, and this year, those fears were with me every single second of every single day. Did I pass this on to them? Would they end up in the same position I did? Can I forgive myself if I did? Thank God we have the answers now and this isn’t something we have to worry about anymore. My prayers were answered.

Their tests reminded me why I’ve been fighting so hard to raise awareness. BAV affects 1 in 100 people, and most don’t know it until something goes wrong. Kids need to be checked. Families need answers. Parents need peace of mind.

I didn’t know at their age. I didn’t know at 20. I didn’t know until I was 44 and already in heart failure. I’m hoping by using my voice that my experience can help others not go through what I did.

My boys are healthy. Their hearts are strong. And now I get to focus on being the dad they need, the dad I want to be, and the dad God called me to be.

I’m grateful, relieved, and more motivated than ever to keep sharing this story.

UPDATE:

When Charlie was born, obviously my biggest fear was that she had BAV. I made sure everyone knew that I wanted her screened and tested as much as possible. Thankfully at our hospital one of the first things they did was her CCHD screening, something every newborn should have. It’s a simple, non-invasive test; just a small pulse oximetry sensor on her hand and foot to check her oxygen levels. It takes a couple of minutes, it doesn’t hurt them at all, and it can detect serious heart defects early.

The screening is usually done between 24 and 48 hours after birth, and thankfully, Charlie passed hers with normal oxygen saturation. If anything had been abnormal, the next step would have been an echocardiogram, but she didn’t need one. No red flags at all.

And on top of that, she has been seen, and heard, by at least ten different doctors and nurses since birth. Every single one of them listened to her heart. Not one heard a murmur, no fluttering, no irregularities, nothing concerning. All clear.

We’ll still follow up as she grows, just like we did with the boys. Early screening saves lives, and every newborn deserves that chance.

But today… today I’m thankful. Today I’m relieved. Today I’m grateful that my little girl’s heart is off to such a strong start.

God is good.