Suzanne O’Sullivan, The Sunday Times, 28/3/2021
Hundreds of children have succumbed to a mystery illness that can keep them in a sleeplike state for years. Leading neurologist Suzanne O’Sullivan investigates
Extracted from The Sleeping Beauties: And Other Stories of Mystery Illness by Suzanne O’Sullivan (Picador 2021)
I had barely stepped across the threshold and I already felt claustrophobic. I could see Nola lying in a bed to my right. She was about ten years old, I guessed. This was her bedroom. I had come knowing what to expect, but somehow I still wasn’t prepared. Five people and one dog had just walked into the room, but she didn’t have so much as a flicker of acknowledgment for any of us. She just lay perfectly still, her eyes closed, apparently peaceful.
“She’s been like this for over a year and a half,” Dr Olssen said as she bent to stroke Nola gently on the cheek.
I was in Horndal, Sweden — a small municipality 100 miles north of Stockholm. Dr Olssen had been caring for Nola since she had first fallen ill, so she knew the family well. She drew the curtains aside to let the light in, then turned to Nola’s parents and said: “The girls have to know it’s daytime. They need sun on their skin.”
“They know it’s day,” her mother answered defensively. “We sit them outside in the morning. They’re in bed because you’re visiting.”
This wasn’t just Nola’s room. Her sister, Helan, who was roughly a year older, lay quietly on the bottom of a set of bunk beds to my left. From where I stood, I could see only the soles of her feet. The upper bunk — their brother’s bed — was empty. He was healthy; I had seen him peeping out from around a corner as I walked to the girls’ room. I was there because I was a neurologist, a specialist in brain disease and someone who is familiar with the power of the mind over the body — more than most doctors, perhaps.
I approached Nola’s bed. As I did, I glanced over my shoulder at Helan, and was surprised to see her eyes open for a second to look at me and then close again.
“She’s awake,” I said to Dr Olssen.
“Yes, Helan’s only in the early stages.”
Nola showed no sign of being awake, lying on top of her bed covers, laid out in preparation for me. She was wearing a pink dress and black-and-white harlequin tights. Her hair was thick and glossy, but her skin was pale. Her lips were an insipid pink, almost colourless. Her hands were folded across her stomach. She looked serene, like the princess who had eaten the poisoned apple. The only certain sign of illness was a nasogastric feeding tube threaded through her nose, secured to her cheek with tape. The only sign of life, the gentle up and down of her chest.
I crouched beside her bed and introduced myself. I knew that, even if she could hear me, she probably couldn’t understand. She knew very little English, and I didn’t speak Swedish or her native language, Kurdish, but I hoped the tone of my voice would reassure her.
Nola and Helan are two of the hundreds of sleeping children who have appeared sporadically in Sweden over a span of 20 years. Rumour suggested the phenomenon had been around since the 1990s, but the number of children affected escalated at the turn of the century. Between 2003 and 2005, 424 cases were reported. There have been hundreds more since. It affects both boys and girls, but with a slight preponderance of girls. Typically, the sleeping sickness had an insidious onset. Children initially became anxious and depressed. Their behaviour changed: they stopped playing with other children and, over time, stopped playing altogether. They slowly withdrew into themselves, and soon they couldn’t go to school. They spoke less and less, until they didn’t speak at all. Eventually they took to bed. If they entered the deepest stage, they could no longer eat or open their eyes. They became completely immobile, showing no response to encouragement from family or friends, and no longer acknowledging pain or hunger or discomfort. They ceased having any active participation in the world.
The first children affected were admitted to hospital. They underwent extensive medical investigations, including CT scans, blood tests, EEGs (electroencephalograms, or brain-wave recordings) and lumbar punctures to look at spinal fluid. The results invariably came back as normal, with the brain-wave recordings contradicting the children’s apparent unconscious state. Even when the children appeared to be deeply unresponsive, their brain waves showed the cycles of waking and sleep that one would expect in a healthy person.
Some of the most severely affected children spent time under close observation in intensive care units, yet still nobody could wake them. Because no disease was found, the help doctors and nurses could offer was limited. They fed the children through tubes, while physiotherapists kept their joints mobile and their lungs clear, and nurses made sure they didn’t develop pressure sores through inactivity. Ultimately, being in hospital didn’t make much difference, so many children were sent home to be cared for by their parents. The children’s ages ranged from 7 to 19. The lucky ones were sick for a few months, but many didn’t wake for years. Some still haven’t woken.
