“Your kids are absolutely stunning!” a family friend gushed over brunch at a gathering.
“Thank you!” I replied, trying to maintain an air of modesty. “We adore them.”
“Which one is the sick one?” she asked, instantly deflating my moment of pride. My stomach twisted with anxiety, but I kept a smile on my face. It’s always challenging to engage in conversations about my children’s health with those who mean well but often ask thoughtless questions or make unintentional, insensitive comments.
“Well, both of my daughters have Long QT Syndrome and bradycardia,” I explained.
“BOTH of them? Oh, that must be awful!” she exclaimed.
Actually, I wanted to say, my girls are amazing, and I’m incredibly grateful for them. Yes, it can be frightening, and I experience anxiety, but they do not make my life miserable.
“What exactly is Long…something with their hearts? What does it do?” she continued, her curiosity evident. We were surrounded by family and friends, along with our three kids, ages 5, 3, and 7 months. How do I explain such a complex health issue without alarming everyone, especially my children?
I launched into my usual explanation: “Long QT syndrome is a Sudden Arrhythmia Death Syndrome (SADS – what a terrible acronym for a family of syndromes!). The QT interval is part of the wave on an ECG.” At this point, my husband rolled up his sleeve to reveal a tattoo he designed to honor our daughter, Emily. It features part of one of her first ECGs taken when she was just a newborn. “In people with Long QT, this measurement can be excessively long, which can disrupt the heart’s rhythm. If adrenaline surges through their bodies, it could cause a chaotic heart rate that, if not resolved, could lead to sudden death.”
Every gaze in the room was fixed on us, and I could only imagine the grim thoughts swirling in their minds.
“But surely there’s a cure… some treatment, right? How can you live in constant uncertainty?” she pressed.
If only there were a simple answer. Don’t you think that if a solution existed, we would jump at the chance to protect our kids?
“Most individuals with Long QT can take beta blockers to help manage adrenaline levels, but my daughters can’t because they also have bradycardia…” I continued. Curious looks were exchanged. “That means they have slow heart rates.” Nods of understanding followed, as if everyone instantly knew what bradycardia meant. “The medication would slow their already low heart rates even further, so we carry AEDs (Automatic External Defibrillators) with us in case of an emergency.”
“That sounds incredibly tough. 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. They’re getting excellent care,” I reminded myself aloud.
Desperate to escape this pity party, I considered making a sudden distraction, maybe pretending the baby needed a diaper change.
“I heard about a girl with Long QT on the news. She was swimming in a championship and dropped dead right after winning the race,” she said, a broad grin on her face, as if she had just unearthed a profound truth. “I thought of you when I heard that.”
Seriously? What am I supposed to say to that? Okay, stay calm. She was trying to express sympathy, but it came across all wrong.
“Uh… thank you,” I managed to stammer.
“I have a friend-of-a-friend whose daughter was born with a heart condition. She spent six months in the NICU and never went home. I can put you in touch with them?”
Just what I need— to connect with a grieving mother and vividly imagine a tragic fate for my own children. Okay, let’s reframe this. She means well.
“Thank you, but we’re planning for our daughters to lead long, healthy lives. If something unfortunate were to happen, then we might consider reaching out to that family,” I said gently.
“Oh… of course. I’m sure they’ll be fine. They’ll probably outgrow it,” she replied reassuringly.
Sigh. I wish with all my heart that this were true. While there’s a reasonable chance my girls will be okay, they won’t just outgrow this condition. I understand how uncomfortable it can be for people to discuss life-threatening health issues with a parent. What I wish she had asked was, “How are you all doing?” or “How’s your family?” or simply “How are the girls?” Those questions convey care and concern for our well-being, and that’s where true kindness lies.
For more insights on navigating health conversations and family dynamics, check out this related blog post. You can also find valuable resources at WebMD for pregnancy and home insemination. Additionally, if you’re considering options for at-home insemination, Make a Mom offers great guidance.
Summary:
Navigating conversations about children’s health can be tricky, especially when well-meaning friends inadvertently bring up sensitive topics. Through personal experiences, I’ve learned that simple, caring questions can foster genuine connections without overwhelming anxiety. Ultimately, the best intentions are often realized in expressions of empathy and support.