Parents warned over Rapunzel syndrome signs after girl's hairball filled stomach
A mum is raising awareness of Rapunzel syndrome after her daughter was left needing an operation to remove a huge hairball from her stomach.
Megan Sayce, 32, from Lenwade, Norfolk, thought her daughter Sophia had broken her infant habit, but in 2023 she was rushed to hospital after fainting from pain in her stomach. There, Sophia underwent surgery to remove a hairball "the size of her belly" that had created a hole in her stomach.
"It was scary," her mum explains. "The hairball filled her whole stomach and had worn away the lining which meant her stomach contents were leaking into her body."
Rapunzel syndrome is a form of trichobezoar, which is usually found in patients with mental health issues, similar to trichotillomania, a hair pulling disorder. The hair eaten can become tangled and trapped in the stomach causing a hairball to form. It can have a long tail extending into the small intestine and cause abdominal pain, nausea and vomiting, bloated stomach, reduced appetite, weight loss and constipation or diarrhoea.
Though rare, the condition can be fatal and in 2017, 16-year-old Jasmine Beever died after an infected hairball in her stomach caused an ulcer to develop which later burst.
Now that her daughter has recovered, Megan wants to tell her story to help raise awareness of Rapunzel syndrome so other parents can look out for the signs. "There isn't much help or knowledge about it, because the act, which causes it, seems quite harmless. But we got lucky with Sophia - if we hadn't taken her to hospital she may have developed sepsis and then who knows what might have happened."
Megan advises parents to try to keep an eye on kids developing the habit of chewing or sucking on their hair and take them to the doctor for further advice. "If they've got belly ache and they're bloated, get answers and try to help them break the habit," she adds.
Sophia's story
Sophia began pulling out her hair when she was just a toddler. "She would do it as she was falling asleep," Megan explains. "She'd pull tufts out all the time. The GP and health visitor didn't really have any advice, but having Googled it I decided to try putting olive oil in her hair and got her some gloves when she slept so she couldn't pull it out."
Megan says this seemed to work, but when Sophia was four she started to feel unwell and then vomited a hairball. "We took her to a doctor but they didn't really know what could stop it. But she eventually got better, stopped eating her hair and it was growing out nicely, so we didn't think much of it."
However, on New Year's Eve 2018 after developing what her parents thought was a stomach bug, Sophia was taken to A&E where she threw up another hairball. Doctors advised that as it had come up there was no cause for concern.
Five years later, in December 2023, Sophia started feeling unwell again. "I woke up at 4am and heard her crying - she said she felt like she was going to die, was throwing up and passed out," Megan explains. "I've never heard her scream in such pain. We called the GP surgery when it opened but they couldn't fit her in until 5pm."
Worried she may have an appendicitis the family decided to take Sophie to hospital. "It turned out she had a hairball the size of her entire belly, which was causing ulcers," Megan explains.
After a four-and-a-half hour gastric perforation surgery, Sophie spent 10 days at the Norfolk and Norwich University Hospital and thankfully is now recovered. "It scared her," Megan says of the experience. "She used to chew on the ends but because there was no bald patch, we didn't think that was what it was. Thankfully, she doesn't do it anymore."
Additional reporting SWNS.
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