Family Tours in the Kingdom of the Sick: Extending Our Stay, or the Long QT
When COVID struck Rebecca Saltzman’s family, the virus unmasked a life-changing discovery: her husband and two of their kids had genetic heart disease. The kind where people drop dead. As their healthy wife and mother, Saltzman had a new role too—guiding her family through what Susan Sontag called the Kingdom of the Sick. In this column, she’ll explore the anthropological strangeness of this new place, the mysteries of the body, and how facing death distills life into its purest form: funny, terrifying, and sublime.
I’m a hopelessly cliché millennial, so when my phone rang in March 2022 with life-changing news, I didn’t pick up. You may miss out forever if you don’t answer opportunity’s knocks, but when bad news comes calling, you can safely let it go to voicemail. Doom won’t lose your number.
Doom, in this case, was Lauren, a nurse practitioner from the COVID research study we were participating in at Children’s National Hospital in Washington, DC. Something had come up on the test results, her message said.
Winter was verging into spring in New York. Little green things were poking out of the ground, and my ten-year-old son’s long COVID had finally turned the corner as well. At one point, he had been the sickest patient at NYC’s only pediatric long COVID clinic. But now his symptoms were gradually abating. Physical therapy had helped him regain strength and endurance. A neurologist had prescribed him magnesium and riboflavin, which had almost eliminated his debilitating headaches.
(Vitamins? All he needed was VITAMINS? Imagine the maternal rage: Watching your child suffer for months. A parade of doctors offering you nothing. Then you learn all of that suffering could have been alleviated by something they sell over the counter at Supplements R Us.)
For the first time in a while, I felt hopeful—our time in the Kingdom of the Sick seemed to be nearing its end. Soon, we could return to the Kingdom of the Well, a.k.a. Normieland.
Nonetheless, the week before Lauren’s call, I had taken Gus to Children’s National Hospital, where he participated in a National Institutes of Health study on pediatric COVID outcomes. (“Dr. Fauci thanks you,” they informed us when we enrolled). At Children’s National, they repeated all of the exams Gus had done in New York—pulmonary tests, EKGs, MRIs, bloodwork. The NIH assured us that if anything medically actionable—another one of those Sickland phrases—came up on the exams, they would notify us. But I expected Gus’s results to all be normal, as they had been in New York.
Gus was doing so well on our DC trip, in fact, that we even got to spend an hour at the Smithsonian, his first fun outing since his illness began five months before. We looked at the taxidermied elephant in the museum’s rotunda, the Comparative Anatomy Hall’s strange yet familiar animal skeletons, a long-ago Egyptian child’s tiny mummified body.
We also had a new travel companion to Sickland—my daughter, Iris, who was then thirteen, also came with us to be in the COVID study. She’d had a mild case of COVID during that winter’s Omicron wave, so I figured she could contribute more data points for science. I assumed all of her test results would be normal, too.
Now, a week after our trip, I suppressed all of my clichéd millennial angst: I called Lauren at Children’s National back.
“Gus and Iris had the same abnormality on their EKG,” she informed me. “A long QT interval.”
One of the weird occupational perks of being a writer is that you file away in your brain all kinds of ways in which people can meet an untimely demise. So, while I didn’t know exactly what a long QT was, I knew it had something to do with the heart. And I knew the most important part: it’s something that can kill you.
“Wait,” I said. “Both of them?”
Yes. Both.
Heart disease, my kids? I considered this, then rejected it. Gus had already had his heart checked out in New York, and all his EKGs were normal. And Iris had never had any health problems at all.
Lauren emailed me the kids’ EKGs from the study, and I made appointments with a local pediatric cardiologist. The doctor couldn’t see us for a week—quick for a specialist, but plenty of time for a mother to obsessively worry and ruminate about death. Everyone will tell you not to jump online and start WebMD-ing every medical issue while you wait. This is good advice. Naturally, I did the opposite.
You’re probably roughly familiar with what a heartbeat looks like on an EKG—that squiggly line with peaks and valleys. On your favorite medical show, it’s the line that always goes flat in the middle of a routine surgery, or when estranged siblings have finally made peace. It turns out those peaks and valleys are lettered:
The QT interval, then, is the part of the heartbeat from letters Q to T. Your heartbeat is a finely tuned electrical system, where the movement of ions causes the heart muscle to contract and relax. This QT interval represents the time it takes the heart to recharge from one beat to the next.
But a long QT is just what it sounds like. The heart is taking too long to recharge. The difference between normal and long is infinitesimally small, measured in milliseconds.
When that recharging part takes too long, it can throw the whole system off. The heartbeat can degenerate into a distinctive electrical chaos called torsades de pointes. If the heart fails to reset itself, torsades can progress to cardiac arrest.
It looked like we might not be escaping the Kingdom of the Sick just yet after all. I was discovering something new about this place—it was not unlike the Mafia. Every time you think you’re out, Sickland pulls you back in. Also, you always owe them money.
The interminable eight-day wait ended, and our appointment at NYU Langone’s pediatric cardiology department arrived. Unlike the other aesthetically confused children’s hospitals we’ve been to, NYU’s is perfectly, relentlessly themed: New York City, minus the rats. The cardiology waiting room is Rockefeller Center. In the exam rooms, painted bears and giraffes ride a suspiciously clean subway.
Dr. C, the head of the division, examined my kids’ EKGs—both the ones from Children’s National and the new ones from that day.
“DC doctors are all hacks. These children are perfectly healthy. Get out of my office!” I waited for Dr. C to say. This would fit the New York theme, too.
Instead, he said:
“Huh. Yeah. These are prolonged.”
The new EKGs had confirmed what the doctors at Children’s National had found. That same delay in my kid’s heartbeats, milliseconds too long to recharge.
Dr. C has intense blue eyes. When he looks at you, you feel like he is really studying you. He once told me about a diagnosis he missed because he overlooked an essential clue that was right in front of him: a girl with a tiny frame and a long QT who came into her appointments with parents built like linebackers. She turned out to have an underlying metabolic disease, which was throwing her electrolytes off balance, in turn causing both the poor growth and the long QT. “I make mistakes, but I try not to make the same mistake twice,” Dr. C said. In other words, he’s exactly the kind of doctor you want taking care of your kids.
Now he turned and studied us all for a moment with that intense gaze. Iris and Gus, but also me and my husband, Josh. Long QT syndrome is passed on genetically. So if both kids had a long QT, chances were that either Josh or I did, too.
In Sickland, I’ve gotten used to doctors rushing us through appointments. But what I remember most about that day is how much time Dr. C spent with us. He quizzed us about our personal medical histories, and those of our families.
Mine, from a cardiology point of view, was boring. But Josh’s maternal side had another type of inherited heart disease, cardiomyopathy. And Josh’s childhood epilepsy piqued Dr. C’s interest, too. One of the hallmark symptoms of long QT is fainting episodes caused by a lack of oxygen to the brain. Sometimes, that lack of oxygen can also trigger seizures.
Did either of us have any relatives who died suddenly, especially at a young age? When long QT runs in the family, there will often be unexplained deaths in the family tree—someone who went to bed and never woke up, or inexplicably crashed their car. We couldn’t think of any examples like that.
“Your dad died in his sleep in his sixties, though,” I said to Josh.
“Yeah, but he had cancer and smoked his whole life,” Josh said.
“But it was still kind of unexpected.”
“Josh, would you mind if we give you an EKG?” Dr. C asked. The preponderance of evidence had made Josh Suspect #1.
Josh obligingly took off his shirt, which is exactly what you want in a husband.
The EKG machine printed another long strip of pink paper. There it was again, in Josh’s heartbeat, too. That same hidden message, written in the hieroglyphs of ions and electricity.
The long QT.
Something was happening. Doom had found our number.
But we didn’t know exactly what was happening yet. Josh, Iris, and Gus all had QT values longer than normal, but not long enough to diagnose the disease. Did they all have true long QT syndrome? Or was this just a case of family members falling further along the bell curve than normal, the way some families are exceptionally tall? We once again found ourselves in the borderlands, like we had with Gus’s long COVID—not sick enough for Sickland, not well enough to leave.
The next step, Dr. C explained, was genetic testing. Because there are several known genes that can cause long QT, and because of Josh’s family history of cardiomyopathy, he recommended we do a comprehensive panel, checking for an array of cardiac diseases.
A nurse came into the room and swabbed the insides of their cheeks. It was just like high school bio lab, except now the stakes were life and death. She sealed the swabs in little tubes, to send off to the genetics lab. The results would arrive in about a month.
And now we waited.