A YOUNG girl with ‘Rapunzel syndrome’ had to undergo a four-hour operation to remove a huge hairball that was “eating through her stomach”.
Sophia Goss began pulling out her hair and chewing on it when she was 18 months old as a “soothing” technique to help her fall asleep.
Mum Megan Sayce, 32, thought she had got her daughter to break her habit in just eight weeks by putting olive oil on the youngster’s locks.
However, Sophia, now nine, was rushed to hospital after passing out from the pain in her stomach.
She spent four hours in surgery and a further 10 days in hospital after medics removed a hairball “the size of her belly” that had created a hole in her stomach.
She was found to be battling Rapunzel syndrome – an extremely rare medical condition where the hair a person has eaten becomes tangled and trapped in their stomach.
Megan, from Lenwade, Norfolk, said: “It was scary. The hairball filled her whole stomach and had worn away the lining which meant her stomach contents were leaking into her body.
“She wasn’t allowed to eat or drink for seven days and was in the high dependency unit for seven of the 10 days she was in hospital.
“Six weeks before she had the operation, we had taken her to the doctors with stomach pain and they said it was her diet without examining her too much.
“They didn’t seem to have much awareness of what it could have been.”
Sophia began pulling out her hair when she was just a tot and had removed half of it before her parents could teach her to stop.
Emma, a shift manager at McDonald’s, said: “She would do it as she was falling asleep.
“She’d pull tufts out all the time, but the GP and health visitor didn’t really have any advice.
“I Googled it and managed to get her to stop in eight weeks.
“I put olive oil in her hair and got her some gloves for when she slept so she couldn’t pull it.
“Then when she was four years old she was very ill and threw up a hairball.
“We took her to a doctor but they didn’t really know what could stop it. She wasn’t pulling her hair as far as we could see.
“She eventually got better, wasn’t eating her hair and it was growing out nicely, so we didn’t think much of it.”
I’ve never heard my daughter scream in such pain. She said she felt like she was going to die
Emma
On New Year’s Eve 2018, Sophia was taken to A&E by her parents as they thought she had a stomach bug – until she cough up a hairball.
They were advised she had thrown it all up and there was nothing to worry about.
However, on December 12, 2023, Sophia woke up in tears, saying she felt like she was “going to die”.
Megan said: “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.
“I’ve never heard her scream in such pain so we called the GP when they opened but they couldn’t fit her in until 5pm.
“We spoke to 111 and they said they’d send an ambulance.
“I went to work and when I came home at 10am because she was still so ill, they called back and said they wouldn’t be sending one.
“They told us not to take her to hospital as it would be too busy but we rushed her to the hospital ourselves. I was worried it was appendicitis.
“It turned out she had a hairball the size of her belly, which was causing ulcers and creating a hole in her stomach.”
After the four-and-a-half hour gastric perforation surgery, Sophie spent 10 days at the Norfolk and Norwich University Hospital and is now recovered.
Megan said: “It scared her. She used to chew on the ends but because there was no bald patch, we didn’t think that was what it was.
“She doesn’t do it anymore.”
Megan and Sophia want to raise awareness of Rapunzel syndrome as they believe opportunities to identify the problem were likely missed.
The mum said: “There isn’t much help or knowledge about Rapunzel syndrome because the act, which causes it, seems quite harmless.
“But we got lucky with Sophia. If we hadn’t taken her to hospital she would’ve got sepsis and then who knows what might have happened.
“Just chewing or sucking on the hair can cause the problems.
“Parents should keep an eye on your children, go to the doctors and push them for answers.
“If they’ve got a belly ache and they’re bloated, get answers and help break the habit.”
The main symptoms of Rapunzel syndrome include abdominal pain, nausea and vomiting, bloated stomach, reduced appetite, weight loss and constipation or diarrhoea.
RAPUNZEL syndrome is a condition that results from ingesting hair.
It occurs when a large hairball, also called trichobezoar, gets lodged in the stomach and extends into the small intestine.
Rapunzel syndrome is named after the fairy tale character, who was known for her long hair.
Symptoms usually include stomach pain, bloating, weight loss, nausea and vomiting.
It is considered “extremely rare”, though exactly how many people experience it is unclear.
Doctors in India previously removed a 15lb hairball from the stomach of a 17-year-old girl, Sweety Kumari.
She is thought to have built up the hairball while eating her own hair over a period of years.
A similar incident occurred in Russia, when an unnamed teenager, 16, was found to be carrying a giant hairball.
And in 2017, doctors removed a 3lb hairball from a woman’s bowel shortly after giving birth.
Rapunzel syndrome can be fatal. Also in 2017, 16-year-old Jasmine Beever died after a hairball in her stomach became infected.
