Teen fed by tube as she waits for life-changing jaw fix

A family say they have "lost faith in the NHS" as their 14-year-old daughter waits for life-changing treatment for her jaw.

Halle, 14, is being fed through a tube and in constant pain as her jaw repeatedly dislocates.

The teenager, from near Cardiff, said she felt she was "just living" since the feeding tube was fitted in August.

Cardiff and Vale University Health Board said it was committed to providing treatment for Halle.

Halle's mother Clare said she had been to A&E at least 15 times in the last six months.

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"Halle's jaw can dislocate at any time - she could wake up with a dislocation or it could be when she's eating," said her mother.

"We would get to the hospital and then she'd have to have gas and air. I'd have to say to her: 'Five more breaths Halle and then they need to put it back in.'

"You could see the anxiety in her face, she was absolutely petrified."

Weight loss

Halle, 14, is now being fed through a tube while she waits for surgery to fix her jaw

The teenager began having problems with her jaw in 2018 but the condition became significantly worse in March this year.

Halle has not been formally diagnosed with a condition but doctors have said they think it might be hypermobility of the jaw.

Joint hypermobility syndrome is when people, usually children and young people, have very flexible joints and causes them pain, according to the NHS.

By the end of July, Halle had to be admitted to hospital as she was not eating or drinking properly because she was worried her jaw might dislocate.

She had lost 3.5 stone (22.5kg).

Halle's mother Clare said she was determined to get her daughter the treatment she needs

"At the time, she was so weak and frail. The child is 14 years of age, she doesn't need her personal care met by me, but I had to shower her in the hospital because she was so frail," said Halle's mother.

"I just kept on saying to Halle: 'I promise you, I will get this sorted'. And that's why I am so determined to get her the treatment she needs."

In July, doctors at the University Hospital of Wales, Cardiff, fitted bands to her back teeth to hold her jaw together, but those teeth are now coming loose.

She has also been seen by doctors in Birmingham and at Great Ormond Street Hospital in London.

She has had some botox treatment in Birmingham, the only treatment available there because she is under 16, but that has not helped.

'Chronic pain'

Halle, who has just started her GCSES, has still been going to school when she can, but said it was hard.

"I don't want people to look at me like this sad frail person" she said.

"I want to be known as strong and fun, but when I get home I am not that person.

"I go to school - I have migraines all day. I have chronic pain all day."

The family have been told that Great Ormond Street in London would be the best place for Halle, but say the local health board will not give them a new NHS referral because doctors said she could be treated in Birmingham.

"Seeing Halle and the change in her is horrific enough in itself," said her mother.

"Let alone the stress added to that about the battle I am having with the NHS. I just feel that we have lost all faith in the NHS."

The family are now trying to raise funds to have Halle treated privately

The family said they were now at the point of giving up, and faced a bill of £10,000 for private treatment.

They are trying to raise money for that treatment through a GoFundMe appeal online.

An official for Cardiff and Vale health board said: "The health board is committed to providing any treatment for Halle locally where possible and in other specialist centres as needed.

"To that effect we have been liaising with colleagues in Birmingham and Great Ormond Street Hospital.

"It is appreciated how difficult and distressing this situation is for Halle and her parents and we will continue to work with them to support any care which is deemed clinically necessary."