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.
Read Part I, Part II, and Part III.
Iris, my teenage daughter, had made a distressing discovery.
“I’m watching an episode of House, and they’re doing a bunch of cardiology tests,” she explained. “And I actually understood what they were talking about.”
I related to her problem, because I had it too: knowledge, unwanted, yet acquired nonetheless.
This is to say: everything I know about the heart, I learned against my will.
Cardiology is a nation that seems to operate at only two speeds: either they’re rushing you to a bed before you meet the Final Boss, or they’ll see you in six months.
Gus and Iris, my two oldest kids, were on the “q6months” schedule now (the q here is from the Latin quaque, for “every”). Q6M seems like an absurd amount to wait when your child might have a life-threatening cardiac disorder or might be totally fine. But in Sickland, there is no greater test than what doctors call the “tincture of time.” The clock will keep the score.
We knew that both Gus and my husband, Josh, had tested positive for the hypertrophic cardiomyopathy gene, and that Iris had tested negative. But we still didn’t know why they all had those prolonged QT intervals or why their hearts took longer than normal to recharge between beats.
House, I remembered, was a procedural about solving medical mysteries—the title character was inspired by Sherlock Holmes. Now, my kids and husband were a medical mystery themselves. Either completely healthy, or at risk of sudden death. Without definite answers, both were true at once: Schrödinger’s heart.
On TV, the brilliant, heterodox doc will pursue every theory, run every test, and defy every hospital administrator until a patient is diagnosed. But in the IRL Kingdom of the Sick, things work differently. Medical care is expensive. Specialists have multi-month waits and overcrowded ERs cram beds into the hallways. Physicians need to stay licensed and employed. So real-life medical mysteries are a lot of waiting around. A lot of appointments that ultimately amount, again, to:
¯\(ツ)/¯
We had entered the Tunnel of Uncertainty, a ride that is more Action Park than Magic Kingdom. Once you board, you cannot disembark. You must let the current carry you to your destination, wherever it may be, as you cling to the safety bar on your questionably regulated vessel.
There are many healthy ways to cope with the stress of the Tunnel, like yoga or meditation. I opted instead for obsessively googling medical studies until my brain was oozing out of my eye sockets.
If Dr. House wasn’t going to come along and diagnose my kids, then I would do it myself, with an MD degree from the University of Al Gore’s Internet.
I read everything I could about long QT syndrome (LQTS). I pored over studies and learned about diagnostic scores and risk calculators. I opened up our genetic data files and looked again at the long, colorful columns of As and Ts and Cs and Gs. But there were no answers to be found.
In 1856, German physician Friedrich Ludwig Meissner wrote what is believed to be the first description of LQTS, a girl who died suddenly while being reprimanded at school. She was preceded in death by two siblings, who also collapsed during emotional moments. It’s easy to forget that case studies describe real people. The history of medicine is written in grief.
Like many other traits of anatomy and physiology, QT measurements fall on a spectrum. If you plot the bell curves of QT length in people with LQTS, and people without it, there is a considerable zone of overlap. This is annoying because our minds like to fit things into neat categories. Good and bad. Sick and well. But the body does not care about our categories. My kids were in the zone of overlap, well toward the end of the normal bell curve.
Long QT and hypertrophic cardiomyopathy are both part of a group of diseases called Sudden Arrhythmia Death Syndromes, or SADS. (“I have SADS” sounds like the worst of aughts millennial slang.) You may not be familiar with the term, but you’ve probably heard about people who died from it. The high school athlete who suddenly dropped in the middle of a game. The healthy young woman who went to bed at night and never woke up.
SADS conditions are particularly insidious because they often cause few to no warning symptoms. The main red flag for SADS is syncope, a euphonious word I love, which simply means fainting. But sometimes—for about one in ten people with LQTS, for example—the very first symptom is cardiac arrest.
When my children were infants, I was afraid they would die in their sleep. Now, that old dread returned. If I called their name down the hall and they didn’t answer back, fear’s cold fist seized me until I heard their voice again.
It is hard to accept that you have no control. My attempt to learn every single medical fact I could about LQTS was my way of trying to wrest at least some control back. After copious unhealthy googling, one thing was clear: I was no Dr. House.
Something else had become clear too. Our best-case scenario was to never have answers at all. To remain forever in the Tunnel of Uncertainty and cloak ourselves in its darkness. Because the only way to find out definitively if my husband and kids had LQTS was for something bad to happen.
What would it mean to live without answers? How could I raise children, never knowing if their hearts were ticking time bombs, or when death’s sickle might come scraping at the door? We would simply have to continue on, mitigating risk where we could, and enjoy being alive for as long as we could.
Wasn’t that always true of parenting, anyway? I had to face what all parents must—that in the end, we are powerless. We pluck our children from the tree of life, and though we can teach them to swim, look both ways before they cross the street, and not touch the stove, we cannot protect them from the world—or even from their own hearts.
But remember the tincture of time? The clock was still keeping score. On the evening of December 5, 2022, I arrived home from work and found my husband sitting on the couch with a strange expression on his face.
“I don’t feel well,” he said, touching his chest. “Something happened today. I was out walking, and I suddenly felt faint and collapsed into a wall.”
Syncope, that lovely word. The great red flag for sudden death.
The Tunnel of Uncertainty’s current was shifting.