At a lively brunch gathering, a family friend turns to me, a warm smile lighting up her face. “Your kids are absolutely precious!” she exclaims.
“Thank you! We think they’re pretty great,” I reply, trying to keep the humility in check.
But then comes the dreaded question: “So, which one is the sick one?” My heart sinks as anxiety twists in my stomach, yet I maintain a cheerful facade. It’s tough discussing my daughters’ health with someone who means well but often ends up asking the most awkward questions or making comments that leave me cringing.
“Well, both of my girls have Long QT Syndrome and bradycardia,” I share hesitantly.
“BOTH of them? Oh no, that sounds awful!” she gasps.
Actually, they’re amazing, and I wouldn’t trade them for anything. Sure, it can be scary, and I do have my anxious moments, but my daughters don’t ruin my life, thank you very much.
“What does that mean again? Long… something with their hearts, right? What does it do?” she probes further.
Surrounded by family and friends, I feel the pressure to explain this complex health issue, and I quickly blurt out: “Long QT syndrome is part of a group known as Sudden Arrhythmia Death Syndromes (or SADS, which is a terrible acronym, by the way). It relates to an ECG measurement.” My husband, eager to help, rolls up his sleeve to reveal a tattoo inspired by one of our daughter Cecily’s first ECGs.
“In people with Long QT, this measurement can become prolonged, which can mess with the heart’s rhythm. If adrenaline kicks in, it could lead to a dangerous heart rate that might result in sudden death.” As I look around, I can see the concern etched on everyone’s faces, and I can only imagine what frightening scenarios are playing out in their minds.
“But there must be some treatment? How do you cope with that uncertainty?” she asks, her voice laced with genuine concern.
If only there were a cure! I wish I could tell her that we have it all figured out. “Most people with Long QT take beta blockers for protection, but my girls can’t because they are also bradycardic,” I explain, trying to keep my voice steady. “That means they have slow heart rates.” I’m met with looks of comprehension as if they’ve known what bradycardia meant their entire lives. “Since the medication would slow their hearts even more, we can’t use it. Instead, we carry AEDs (Automatic External Defibrillators) everywhere, just in case.”
“That sounds incredibly tough. So they’re completely unprotected? You must be terrified!”
Well, yes, I am. Thanks for the reminder.
“We see the best pediatric electrophysiologist in the country, so they’re getting excellent care,” I manage to say, trying to reassure myself.
Feeling desperate to escape this pity party, I contemplate making a loud noise to divert attention.
“I heard about a girl with Long QT on the news,” she continues, a wide grin on her face, “she was swimming in a championship and just dropped dead right after winning!” My heart sinks further. “I thought of you when I heard that.”
Seriously? What do I even say to that? I take a deep breath, reminding myself that she’s trying to empathize, but it really misses the mark.
“Uh… thanks?” I reply, my voice shaky.
“I know someone whose daughter had a heart condition and spent six months in the NICU before passing away. I can connect you with them?”
Oh, that’s exactly what I need—more reminders of tragic outcomes. “Thank you, but we’re focusing on our girls living long, healthy lives. If something were to happen, then we might reach out,” I say gently.
“Oh… right. I’m sure they will be just fine. They’ll probably outgrow it,” she reassures me.
Sigh. I wish that were true. While there’s a good chance they’ll be okay, they won’t just grow out of it. It’s tough to talk about life-threatening conditions with someone who means well but doesn’t know how to ask the right questions. What I’d prefer instead? A simple, “How are you all?” or “How are the girls?” Those are the heartfelt inquiries that show genuine care and concern.