Treating kids with sleep disorders stirs thoughts of a lifetime of restless nights

When I was about 7 years old, I lost the ability to place my head on my pillow, close my eyes, and trust that I would soon slide away into that mysterious state of sleep. Since then, some nights I drift in and out of sleep, others I lay awake all night.

Why did this happen to me? An easy answer is genetics. My mother had a nighttime routine of reading for hour after hour in the darkness by the light of the red lamp firmly rooted on the table next to her bed. My two sisters and I could depend on hearing my mother’s recounting of Pip’s adventures, the sadness of Emma Bovary, or the train crash that prefigured the tragic story of Anna Karenina, depending upon where she had traveled during her readings the night before, just as we could count on my father’s early-morning routine of brewing a pot of coffee and putting out the cereal and milk for our breakfast.

A childhood of sleepless nights prepared me well for going into medicine, with its sleep-disrupting 80-hour work weeks and overnight shifts. Most of my colleagues struggled to adjust their lives to include this newfound pattern of nighttime activity, but I often found it a welcome change from my nights of sleepless wakefulness.

When the time came to choose a specialty, I knew I wanted to take care of children and their families, having grown up in a household where a child — my brother Jonathan — had died of leukemia at age 3. That, combined with being a literature major in college interested in dialogue, communication, and human interaction, drew me to otolaryngology, the surgical and medical management of conditions of the head and neck. And as an insomniac, I was drawn to children with sleep disorders, to see why they had these conditions, what effects sleeplessness wrought on them and their families, and how I could help them.

A few years ago, I talked with a woman I’ll call Josie, who sat exhausted in the small double-armed chair for parents in the exam room. Next to her was her 13-year-old son, Paul, who had Down syndrome. Paul occupied his time by quietly rocking back and forth in the exam chair, turning his ever-present smile to each of us when we spoke, and announcing “Yes” to our every statement, as if to give us his seal of approval.

When I examined Paul’s mouth, I observed that he had an overly large tongue. This is a common physical attribute of people with Down syndrome that can cause breathing problems during sleep when the tongue relaxes, falls backward a bit, and blocks the airway.

Josie told me that, during the day, Paul oscillated between being tired and dozing off at any moment with being almost hyperactive and frenetic without the ability to focus even on the video games he loved. Nighttime was a different story.

Josie described their nighttime routine like this: From a cot set up next to Paul’s bed, she would listen to him quickly drift off to sleep, and then begin to snore. Not long after that, Paul’s chest would heave as he struggled to breathe. Josie did not know until later that this struggle was due to his tongue obstructing his airway — her maternal instinct simply told her there was something very wrong. Josie and her husband, Bob, who I met later, switched off these nighttime vigils so the other could get some much-needed sleep.

Paul’s struggle was the reason Josie and Bob spent their nights not with each other but by their son’s side. Each time Paul labored to draw a breath in his deep slumber, one of his parents, fearing he had taken his last breath, would nudge their son to arouse him just enough that he would awaken, draw in a breath, then drift off again — and the Sisyphean cycle of struggles would resume.

Josie told me of her own immense fatigue as, all day long, she found herself searching the internet for games she could play on her phone at two, three, or four in the morning while sitting beside Paul’s bed as he labored to draw a breath.

If our nights intertwine with our days, then it made perfect sense when Josie told me how Paul, now a teenager, might be smiley and accommodating in a doctor’s office but at home and at school was becoming increasingly withdrawn, angry, and irritable — as, in fact, was she.

As I listened to Josie’s story, I was struck by her overwhelming struggle to help her child, and how doctors, nurses, and other medical workers often forget the effects that caring for sick children have upon the parents and on the other children in their families. Parents like Josie struggle with their own lack of sleep as they tend to their children. These parents have no internal night demons; they could sleep, and want to sleep, but they force themselves not to for the sake of their children.

Josie and Paul had come to see me because I was running a multicentered, FDA-approved clinical trial to evaluate the effects of a pacemaker inserted under the skin of children with Down syndrome and severe obstructed breathing during sleep. The device stimulates the tongue to move forward during sleep so it does not block the airway.

As I reviewed the procedure with Josie — and with Bob, who joined us by phone — I could not help thinking how much they had been suffering to make them come from halfway across the country to see me and to even entertain having their son be one of the children to undergo this experimental treatment. From a patient’s or parent’s perspective, participating in “innovation” is often driven by desperation. Knowing this, I spent extra time reviewing the risks and benefits in detail.

Josie and Bob agreed to let me to implant the device in Paul’s chest. The operation was a success, Paul recovered in the hospital for a few days, and then he and his mother went home.

A few days later, Josie recounted for me the mixed sensation of fear, trepidation, excitement, and awe the first night home and the device was fully turned on. She sat by Paul’s bed as he fell asleep and witnessed the stimulator at work when she saw the faint outline of his tongue moving silently forward and back as he slept. She watched him stop tossing and turning and heard the silence of his breathing.

At first she was worried and felt the urge to lean over and nudge Paul, just to be sure he was still breathing. But as she was about to do so, she saw his chest rise and heard him take another unobstructed breath. She told me of the first time in three years she had left Paul’s room and gone into her own. She lay down in her own bed next to Bob and let her eyes close without a struggle. No matter how wonderful this felt, Josie told me, it was nothing compared to the feeling when she awoke the next morning to find that the fuzzy, exhausted feeling she had simply accepted as part of life had lifted. For her, it truly felt like a brand new day.

My colleagues and I had designed the clinical trial using traditional medical outcomes, like the number of times per hour a child either stopped breathing or labored to breathe. But the more I listened to Josie, the more I realized we were missing measures we had not thought to record but which revealed a more powerful, underlying story. She and other parents rarely focused on their child’s now-peaceful sleep, which is what I had expected them to focus on. Instead, they talked about how much their child’s daytime activities or “smoothness of conversation” had improved, or how their child was making better connections with other children and the world around them.

The Greek poet Epicurus wrote that, “Against other things it is possible to obtain security, but when it comes to death, we human beings live in an unwalled city.” Listening to Josie’s story made me realize that sleep is the other unwalled city we inhabit. The need to sleep runs deep, and this somnolent state is beyond our control to fully avoid or disregard, despite how much we may struggle against this need.

As a boy, I lived in an unwalled city at night, often finding myself face to face with my dead brother.

Josie and Bob, along with many other parents, pinned their hopes on a new technology that helped their children only at night because our nights and days are not disconnected but are really one, and each of us struggles to find the path that weaves our nights into the fabric of our days.

For each participant, the tongue stimulator study officially runs for a full year. The final test of how well the device is working is for the child to have one last in-clinic sleep study to evaluate his or her sleep. It also gives me an opportunity to see the child’s parent or parents to find out how nights and days and life are going for them. Though qualitative, these long-lasting measures of success and failure are extremely meaningful.

Bob brought Paul to his final overnight sleep study. As the sleep techs placed sensors on Paul’s chest while he played on his iPad, Ben told me how Paul and his sisters could now sit and play board games for hours without Paul routinely becoming distracted or getting up.

The next morning, I came in early to go over the preliminary results of the sleep study and to say goodbye to Paul and Bob. I first spoke with Rosa, the chief sleep technician, who told me that Paul had slept quietly and, though she hadn’t reviewed the recordings, no longer seemed to have sleep apnea. Bob, however, did. “Like so many times when it’s the father who brings the child, when you listen to the nighttime tape, it’s the father you’re hearing snoring and not the child. Fathers and sons. It’s the father who now clearly needs some treatment.”

I smiled and shared a laugh with her. Then my thoughts turned inwards.

Like father, like son. For me it was like mother, like son. I closed my eyes and felt myself return to the morning so many years ago after my first sleepless night when I sat at my family’s kitchen table, listening to routine conversations and feeling like a haze separated me from them — and me from the “me” I was used to. I felt I had stepped through Alice’s rabbit hole into another world and now was some specter sitting ghostly at my family’s table, observing.

When I opened my eyes, I wondered what book my mother would be reading in the quiet, early hours of the night to come. Perhaps we would be reading the same book, each having learned the art not of struggling but rather accepting ourselves as citizens floating within that unwalled city, waiting for the moment, late at night or early in the morning, when our eyes would simply need to close.

Christopher Hartnick is an otolaryngologist; director of pediatric otolaryngology and director of the Pediatric Airway, Voice and Swallowing Center at Mass Eye and Ear in Boston; and a professor of otolaryngology–head and neck surgery at Harvard Medical School.  This essay reflects the author’s present recollections of experiences over time. Some names and characteristics such as age and sex have been changed to anonymize the characters, and some events have been compressed. A longer version of this essay was published on Medium.