By: Kellie M.
When I was pregnant with my daughter, I knew there was a chance she would have Long QT Syndrome. I have it, both of my siblings have it, and my mom has it. So do my grandma and some of her siblings.
For us, Long QT Syndrome is a normal part of life. So as my husband and I anticipated our daughter’s birth, I wondered about her heart the same way I wondered about the color of her hair and eyes.
My daughter was born via C-section at 37 weeks. A few hours after birth, she had to go to the NICU for low blood sugar. When the NICU doctor learned about my family history of Long QT Syndrome, she wanted to get our baby checked as soon as possible. At five days old, she was transferred to a different hospital in a larger city for testing and possible treatment.
There, her new doctor ordered genetic testing. But it was a Friday night, and they wouldn’t be able to draw blood and send it off until Monday. Then, we’d have to wait weeks for the results.
Based on our daughter’s EKGs and my family history, the doctor wanted to treat her as if she had Long QT Syndrome. That meant starting her on Propranolol. The doctor assured us that giving our baby a beta blocker wouldn’t hurt her in any way, even if it turned out she didn’t need it. From the doctor’s perspective, it was better to err on the side of caution. My husband and I completely agreed.
I knew that if our daughter was taking the beta blocker, I would have peace of mind while we waited for her test results. If she wasn’t taking it, I would worry that we were putting her at risk.
I also knew from experience that starting beta blockers at a young age was nothing to be afraid of. My sister and I were taking beta blockers by the time we were 3 and 10 years old. My brother started taking his even earlier, when he was still a baby. Taking beta blockers fits as naturally into our daily routines as eating breakfast and brushing our teeth. And we’ve all grown up to live happy, healthy lives.
So when our daughter got her first dose of Propranolol, I had no misgivings. I trusted her team of specialists, and I wanted to make sure we were doing all we could to protect her tender little heart. My biggest worry was that she wouldn’t like the taste—after all, I’d have to give it to her multiple times a day. To my surprise, she loved it. In this big world that was still so new to her, it blended in as just one more new thing. Her nurses kept close watch over her, checking to make sure she adjusted well.
When she was one week old, after some final health checks and a blood draw for the genetic testing, we got to take our baby home. We learned several weeks later that starting her on a beta blocker was the right move—her test results came back positive. She has Long QT Type 2, like I do.
Taking Propranolol hasn’t had any negative effects on her life. She’s doing all the things a normal 8-month-old does: gaining weight, eating well, sleeping, babbling, playing. Just watching her, you’d never know she has a serious heart condition.
Because she started taking her beta blocker before we even brought her home, it has always been part of our childcare routine. She’s our first child, so as parents, we don’t know anything different. It’s normal for us.
That doesn’t mean it’s without the occasional challenge. I’m pretty sure our daughter would sleep for 12 hours straight if we let her, but right now, she has to take her medicine every eight hours. Every night, I have to pull myself out of bed to wake a sleeping baby. But I know it’s for her benefit. I also know this phase is temporary—when she’s big enough, she’ll switch to a different beta blocker with a once-a-day dose. She’ll be able to sleep as long as she wants, with no interruptions.
It has also taken time to find a medicine routine that works for us. With the doctor’s permission, we’ve adjusted which times of day we give our daughter her beta blocker. (Talk to your doctor for guidance.) Right now, we do one dose during the bedtime routine, one overnight, and one mid-morning. That way, there’s only one time of day when we might be out of the house and need to bring her medicine with us.
Having a baby on long-term prescription medicine might seem overwhelming, but it doesn’t have to be scary or negative. Sometimes, it’s simply a necessary part of life. People often associate medicine with sickness. But I do not have a sick baby. Yes, my daughter has a heart condition, but she is healthy and strong, and her life will not be any less fulfilling than I dreamed it would be.