At a lively brunch gathering, a family friend beamed, “Your children are absolutely stunning!” I smiled modestly, replying, “Thank you! We cherish them.”
Then came the question that deflated my moment of pride: “Which one is the sick one?” My stomach twisted with anxiety, but I maintained my smile, masking the unease that arose whenever my girls’ health was brought up. It’s never easy to navigate these conversations with well-meaning individuals who sometimes ask thoughtless questions or make clumsy remarks.
“Both of my daughters have Long QT Syndrome and bradycardia,” I explained.
“Oh my God, they both have it? That sounds terrible!” she exclaimed.
Actually, I thought, my daughters are incredible and I feel blessed to have them. Yes, there are moments of fear and anxiety, but I wouldn’t trade them for anything.
“What’s Long QT again? It’s something about their hearts, right? What does that mean?” she probed. With family and friends around, I needed to explain this complex health issue without alarming anyone, especially my children, ages 5, 3, and 7 months.
I quickly recited my usual explanation: “Long QT Syndrome is a Sudden Arrhythmia Death Syndrome (SADS). The QT interval is part of an ECG wave.” My husband chimed in, rolling up his shirt sleeve to reveal a tattoo that honors our daughter, featuring a segment from one of her early ECGs. “In individuals with Long QT, that measurement can be prolonged, which can disrupt the heart’s rhythm. In stressful situations, like during exercise, this could lead to a chaotic heart rate and potentially sudden death.” I could feel the attention of everyone in the room shift, a mix of concern and dread settling in their expressions.
“But there must be some cure or treatment, right? How can you live with such uncertainty?” she implored.
If only there were a straightforward solution to help my daughters. “Most individuals with Long QT can take beta blockers to manage adrenaline, but due to their bradycardia…” I paused, noting the puzzled looks. “Bradycardia means they have slow heart rates. Medication would further slow them down, so they can’t take those.” Hence, we carry AEDs (Automatic External Defibrillators) wherever we go, just in case.
“That must be incredibly hard. They’re entirely unprotected? You must be terrified!”
Yes, thank you for that reminder.
“We see the best pediatric electrophysiologist in the country, and they receive excellent care,” I reassured myself aloud, desperate to escape this unintentional pity party.
“I remember hearing about a girl with Long QT on the news,” she said, her eyes wide with realization. “She was swimming in the state championships and died right after winning!”
Really? What am I supposed to say to that? Calm down. I knew she meant to acknowledge my family’s challenges, but it was an epic fail.
“Uh… Thanks,” I managed to reply.
“I have a friend whose daughter was born with a heart condition. She spent months in the NICU and never made it home. I could connect you with them?”
Great, just what I want— to get involved with a grieving mother to deepen my fears about my own children’s health. But I took a breath, remembering her good intentions. “Thank you, but we envision our daughters living long lives. If the worst were to happen, we might consider connecting later,” I said gently.
“Oh, of course! I’m sure they’ll be just fine. They might even grow out of it,” she offered, trying to be reassuring.
Sigh. I wish that were true. While there’s a chance my girls will be okay, they won’t simply outgrow this condition. I understand that discussing life-threatening issues with a mother can feel awkward. I wish she had asked something simpler, like “How are your family doing?” These questions express genuine concern and care for our well-being, reflecting the best of intentions.
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Summary:
Navigating conversations about health challenges with loved ones can be difficult, especially when they come from a place of compassion but miss the mark. As a mother of two daughters with Long QT Syndrome and bradycardia, I find myself constantly balancing pride in my children and anxiety over their health. It’s essential to foster understanding and genuine concern, steering clear of insensitive comments and focusing instead on heartfelt inquiries about well-being.