One Night At A Time

Lizzie Simon

For the first two and a half years of my youngest daughter’s life, she slept on a monitor beneath her crib mattress designed to detect micro movements and to sound an alarm if she went into cardiac arrest while sleeping. She has a rare condition called Long QT Type 15, in which the interval between her heartbeats goes on for too long, so from the day she was born, we had to be around-the-clock-ready to revive her.

Her first electrophysiologist, Dr. Barry Love (yep, his real name), recommended the monitor. If the alarm went off, I would strip her and stick pads from a portable defibrillator on her front and back and press the button to shock her. That prospect, and the fact of her needing, like any baby, to eat every few hours throughout the night, warped the time between the sun setting and rising. How do any of you live with this? I asked a social media group for the parents of kids with Long QT. We just do, they said, sharing pictures of their children at ballet recitals and graduations, and you will, too. Soon I found my rhythm with the monitor, clicking it on when I placed her in the crib and clicking it off when I took her out of the crib.

Dr. Love was very upbeat, even when saying dreadful things, and I thought of him as Happy Clown, in part because his comportment was so different from Dr. Rajesh Shenoy, my daughter’s cardiologist, a kindhearted and somewhat mournful person whom I privately named Sad Clown. In the five weeks she was in the NICU, following a heart surgery at seven hours old to install a pacemaker, they would appear out of nowhere to discuss something complicated and concerning. They were such excellent doctors trying to impart such difficult news, and I would cope, and maybe rebel, by privately making up dumb little jokes.

I couldn’t quite reckon with what was happening and what it meant. I remember Dr. Love explaining that an electrophysiologist is kind of like a plumber and an electrician, whereas a heart failure doctor specializes in cardiomyopathy and transplant. I asked him what heart failure doctors were called and he said, “They’re called heart failure doctors.” I started pitching him better, more positive names, until he pulled us back to our excruciating topic, which was my daughter’s medical fragility and what would be expected of me to ensure her survival.

The funny thing I remember about the crib monitor is that if you needed to troubleshoot something, the customer service number connected you directly to a friend of my dad’s. I mean, not literally, but he had the same vibe as the folks my dad knows from his career as a pediatrician in public health. It always felt like the guy who answered had been watching a ball game but still picked up the phone to help one of Peter’s kids.

We were first tipped off that my daughter had a heart condition when I was about six months pregnant at a routine check in with my Ob-gyn. I was tired, it was winter, it was tiring keeping up with my then two-and-a-half year old daughter, and a career. My Ob-Gyn heard a slow-in-utero heartbeat. It was so slow she assumed her machine was malfunctioning so we switched to a different machine. It wasn’t malfunctioning.

“You’re going to need to go to the hospital,” she said, and I assumed she meant at some point in the near future. “No,” she said. “Right now.”

I thought, this is a bit much. There goes my afternoon.

At the hospital, they hooked me up to a bunch of machines and the Ob-gyn said he would deliver the baby that day if he could. I thought he was overreacting too.

I went home with instructions to see other specialists. My husband, my mother and my father assumed the doctors were overreacting, too. We felt that pregnancies were over monitored, that American healthcare was increasingly influenced by doctors fearing malpractice lawsuits. We didn’t think: Something’s very wrong with the baby. We didn’t see what was coming.

The next week I saw Sad Clown for the first time—he was so lovely and kind—and I assumed he was a guy walking through his life concerned and a little blue. I did not think: Something’s very wrong with the baby and he feels badly about that. I did not think: He sees what’s coming.

I never had to defibrillate my daughter, not in the daytime, and not in the middle of the night. When she was two-and-a-half, she had a surgery to implant an internal defibrillator (ICD) which would shock her if she went into cardiac arrest, and we chucked the crib monitor. Scientists haven’t yet developed an ICD small enough to install in a baby, and my daughter’s doctors wanted to wait until she was four to install hers, but the risks of waiting outgrew the risks of installing. An alarm sounds after a shock has been administered—in case parents are in another room. This is something a doctor must have told me when my daughter was in post op, but I was probably too busy nicknaming him and doing a re-write on his word choices to have the info really register. My daughter calls the ICD her power pack.

One night when she was four, after we’d been out seeing an Ethiopian circus, my daughter went into cardiac arrest on the sidewalk in the dark in the rain. One second she was racing her older sister to our building, in the next she was crumpled on the ground at the foot of an elderly woman screaming Help! Help!

By the time I reached her, by the time I picked her up, her ICD had already shocked her. She was holding her chest, in some pain but more confused and disoriented. Owie, she wailed. My husband and I chose not to respond to the woman wagging her finger, admonishing us for letting our kids run wild.

We went home and left a message for the electrophysiologist. We told our older daughter that her sister had fainted. Waiting on the couch, our youngest watched YouTube videos and gradually regained her equilibrium while my husband and I debated a bit about what had just happened, my defense mechanisms jousting with his defense mechanisms, jousting in a muted way, of course, so our kids would remain unfazed, and this went on for a minute or two until my youngest interrupted: What’s that noise?

I had assumed she was watching a YouTube video with a European ambulance in it, you know, wee ooh wee ooh wee ooh, but when I turned her tablet off, the alarm continued, from inside her chest.

It’s got to be one of the strangest, eeriest things I’ve ever witnessed. It’s OK, I said, it’s just your power pack letting us know it did its job. When her doc called he told us he wasn’t able to turn the alarm off remotely, so it would go off every 6 or 10 hours, he couldn’t remember, until we could get to his office the next afternoon.

It went off every three hours. She slept next to me that night and the alarm rang for a minute or so at 11PM, 2AM and 5AM. She slept through it, I did not. Wee ooh wee ooh wee ooh from the little body breathing next to mine, sleeping in the position of a chicken roast. I was grateful - hmm that’s not a strong enough word - that she was alive.

Sudden Unexpected Death is a symptom of Long QT — a symptom. So mine is a child whose entire life has been made possible by modern medicine and technology—from the ultrasound that first detected a slow heartbeat, to the pacemaker, the defibrillator, the ICD, the three medicines she takes daily, the echocardiograms, EKGs and heart monitors that affix to her chest like big stickers. These contemporary technologies together have created a level of safety that allows her to be out of a medical setting and in the stream of a typical child, attending public schools and camps and joining gardening clubs and traveling with her family. But it is the crib monitor that was invented specifically for the domestic realm, the crib monitor’s makers who specifically were imagining the parent experience and thinking of a parent’s capacity to sleep through the night.

I’ll never forget sending her into school in the morning after her cardiac arrest. Seeing her unbothered by having briefly died the night before. Letting her amazing Pre-K teacher know what had happened, and that an alarm might go off, from inside of her. Feeling relief when the doc turned the alarm off.

Do I worry about what might happen in the night each and every night before I go to bed? I do not. Not having to click the crib monitor on and off aids in the healthy forgetting I do between cardiac crises. My daughter is seven now. Those Long QT parents on the social media group, they were right. I live with it, I just do. My sleep, on most nights, is sound.

Lizzie is a screenwriter, developmental editor and the author of a mental health memoir, Detour (Atria Books). Her Substack, Lizzie's Letter, is a weekly delight of humor, solace, observation and recommendation.