Giving birth to your child, especially if he/she is the first-born, is one of the most precious moments of a mother’s life.
But for Jody Robson, 24, she has no memory of it.
Jody claims to have a rare condition called the Kleine-Levin Syndrome (KLS) — also known as the Sleeping Beauty syndrome — where sufferers fall asleep for days or weeks. It is then followed by an equally lengthy recovery time, during which the person wakes up into a trance-like state. Each cycle is referred to as an episode.
It is because of this that Jody does not remember the arrival of her first child, Harley, who is now six years old. She was in the “recovery period” through the whole natural delivery and then fell back asleep. She snapped out of the trance two weeks later to realize that her baby belly had gone.
According to Professor Matthew Walker of the National Hospital for Neurology and Neurosurgery, “Very often what people say is that it’s almost like being in a dream. They just have images that they can remember.
“And the recollection that she (Jody) may have may just be like snippets of a sort of dream-like state.”
Describing her recovery period, Jody says that she couldn’t even remember who she is, let alone anyone else. In her words, “everything was dreamy”.
“When people are talking nothing is going into my brain, so I just look at them weirdly,” she shared.
Sleeping beauty syndrome: Not her first time experience
Jody’s first experience with sleeping beauty syndrome or KLS was when she was 12, during a sleepover at a friend’s house. She slept for eight days.
Between then and now, she has missed out on occasions like Christmas and almost missed her wedding — she woke up just days before it.
Jody says, “I’ve missed holidays and my sister’s 18th birthday because I was in a sleeping beauty syndrome episode. It upsets me because I don’t remember giving birth and it’s supposed to be a precious moment. I think that’s the most upsetting episode I ever had. It gets me emotional because I missed it.
“I had seven episodes the first year Harley was born. I was asleep pretty much most of that year. It is very frustrating.”
Jody has a younger son now, Riley, who is three.
Jody’s life after the sleeping beauty syndrome
The family relies heavily on Jody’s husband — Steven, 29 — who takes care of the kids’ school runs, bath time, bedtime and meals, together with the help of her mother.
She also depends on him to fill her in on what has happened while she has an episode.
While she sleeps, Steven can and will momentarily wake her up at least twice a day to make sure she eats a snack, drink water and use the toilet. But her behavior will be that of a person sleepwalking; she will have no recollection of what she says or does and will immediately fall back asleep.
“The sleeping part is not so scary — it’s the recovery afterwards,” Jody admits. “You are scared that you are not going to be out and back to normal again and the days just drag away.”
To Jody, times when she is awake is truly cherished. Be it trips to the park or the zoo, or simply staying home playing and watching television, every moment is treasured.
Despite the dreadful impact sleeping beauty syndrome or KLS has on Jody’s life, doctors have yet to officially diagnose her. She claims that one doctor even had to Google it during a consultation due to the extreme rarity of the condition, which only has about 1,000 known sufferers worldwide.
“I just want a diagnosis so I can get some help.”
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Also read: Lying down with your kids until they fall asleep is not actually a bad thing
Republished with permission from theAsianParent Singapore