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Mother’s Plea For NHS To Fund Treatment For Babies Born With Skull Deformity

A mother whose baby has a skull deformity which causes a flattening of the head is calling for treatment to be funded by the NHS.

Nicola Leishman’s nine-month-old son Conall was born with his head twisted to the left — later identified as torticollis — which constricts the neck muscles.

It led to plagiocephaly, also known as flat head syndrome, because he was lying in the same position for months.

The 38-year-old says her twin boy was left, “screaming in pain,” because of two related conditions that she says were not identified until he was five months old.

Doctors believe the torticollis may have been caused by a lack of space in the uterus alongside his twin sister Freya.

Nicola Leshiman with her baby Connall who has a condition which requires him to wear a helmet.

Helmet therapy, or cranial orthosis, is a type of treatment in which a baby is fitted with a special helmet to correct the shape of the skull.

However the corrective treatment is only available privately because the health service says there is “no evidence” that it works.

But Nicola says pictures of her son Conall before and after he started treatment are proof that it is effective after seeing a significant change in just four weeks.

The NHS advises the skull should correct itself naturally over time.

They say parents should take measures to ease pressure on the flattened part of their head and encourage babies to lie in different positions.

However, Nicola believes the treatment should be made available for babies with severe cases.

Connall with his twin sister Freya.

Estimates suggest positional plagiocephaly affects around half of all babies under a year old but to varying degrees.

Nicola who lives in Knightswood, Glasgow said: “Conall was born with his head lying to the left.

“I kept saying, there is something wrong with his neck and his head. I did all my own research.

“It got to one Sunday, he was screaming in absolute pain and I rushed him up the kids hospital.

“They did an X-Ray and couldn’t believe that it hadn’t been picked up before.”

Nicola said the left part of Conall’s forehead and jaw bone were “bulging”, his left eye had changed shape and that one ear was a different size form the other.

“Because of the torticolis not being picked up he had lain in the same position for six months which then caused the flat skull.”, she said.

“Freya was twin two so she had a bit more space.

“We were referred to a physio but we waited ages for an appointment. We felt it wasn’t doing enough for him and the appointments were too far apart.

“His condition was getting worse so we went to a private cranial osteopath.

“He gets a break from wearing the helmet in the morning and a break at night.

“The NHS don’t see (helmet therapy) as being a medical treatment, they see it as being cosmetic.

“They don’t see there being enough evidence that it works.

“Personally, my pictures speak for themselves.

“Within four weeks of helmet therapy the forehead bulge completely disappeared. The back right bulge had gone.

“There are a lot of babies who go without the treatment because parents can’t afford it.

“It’s been really frustrating to get information or help.

“Conall is is one of the severe cases. There are babies out there, who aren’t as bad, where it might correct itself but when you have got severe cases.

“If the torticollis had been picked up earlier he might not have had to go through helmet therapy.

“He could have got more physio to help the neck to save him lying in the same position for months.

“We are now working with a physio at Hampden who works with a lot of babies with cerebral palsy and she is fantastic.

“We saw an improvement after the first session.”

The condition is more common since a campaign was launched in the early 1990s to help combat Sudden Infant Death Syndrome (SIDS) or cot death, when parents were advised to put babies on their backs at night.

Experts say it can lead to muscles in the neck and upper back not being stretched out as they were with tummy sleeping.

However, doctors still recommend that babies sleep on their backs as the benefit of reducing SIDS far outweighs any dangers due to positional plagiocephaly.

It is hoped that Conall will be free of the helmet in February.

But he may need surgery on his neck when he is two if physio hasn’t remedied the problem.

Meanwhile, Nicola, who is married to Scott, 39, and has two other children, Cameron 10, and Arran, 8, has launched a petition calling for helmet therapy to be available on the NHS in the most severe cases.

A health board spokeswoman said: “NHS Greater Glasgow and Clyde does not offer helmets or headbands in the treatment of children with plagiocephaly or brachycephaly.

“The reason for this is not a funding issue but because there is no clear, medical evidence that they work.

“Parents are given tips on how to reduce pressure on the flattened part of the head including reducing the time their baby spends lying on a flat surface.

“If there are ongoing parental concerns then our medical paediatric team is available to review and reassure parents.”

A Scottish Government spokesman: “We expect boards to engage fully with patients and families and follow evidence-based care guidelines.”

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