Leiston family’s anger after treatment for baby’s head ruled out by NHS as ‘cosmetic’
A Suffolk couple have been left disappointed and angry after being told the NHS will not carry out “cosmetic” treatment to help their baby who was born with skull problems.
Stuart Mays’ and Charlene Howard’s son Riley suffered what is commonly known as flathead syndrome after a difficult birth.
But despite the couple’s concern about possible long-term health risks for little Riley, doctors said the only way they could get corrective treatment for the condition was to pay for it privately – because the NHS does not carry out cosmetic work.
Seven-month-old Riley has been fortunate to see a private consultant after a family member stumped up £1,950 but his mum and dad are now launching a charity to help other parents who cannot afford the treatment.
Mr Mays, 28, a handyman, said: “We couldn’t believe it when the doctor said we would have to go private because it would be cosmetic work.
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“It’s ridiculous. The NHS does breast reductions and other cosmetic work. We are talking about a baby with the whole of his life ahead of him and perhaps having to stay like that forever.”
After initial difficulties giving birth, Ms Howard, 28, had an emergency cesarean and Riley was born with both torticollis, an imbalance of the neck muscles, and plagiocephaly, with his head flattened at the back and side.
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The engaged couple – who also have daughters Keeley, six, and Amelia, four – say they were told his flat head was of 98% severity.
Ms Howard said: “We were told by the doctors that there was every chance Riley’s head would correct itself but we were not convinced and felt it was getting much flatter rather than getting better. We were worried that it could be health risk and how it was affecting and pushing on his brain.”
The couple – who live in Station Road, Leiston – were told action was needed within months while the skull bone was still soft. They had to regularly change his position at night when he was lying down to help his head reshape but there was no guarantee he would not move again.
The private consultant fitted Riley with a helmet, which he has to wear 23 hours a day and has to be regularly adjusted to reshape his head. The couple say it is working and hope he will need only one course of treatment.
NHS officials say the health service does not have a cosmetic procedure list and funding for equipment like a helmet or surgery for a breast reduction would be in “exceptional circumstances” with a medical need and proven benefits for the patient.
Barbara McLean, chief nurse, NHS Ipswich and East Suffolk Clinical Commissioning Group, said: “Both locally and nationally the NHS does not usually fund the use of cranial remoulding orthosis (helmets and headbands) for babies with plagiocephaly.
“Although we recognise plagiocephaly can cause concern for parents, this is a largely cosmetic issue.
“Nationally, helmets and headbands are not available on the NHS.
“This is because there is not enough evidence to show they will make any improvement to the shape of a baby’s head. In the majority of cases the condition will resolve itself by following advice on positioning of the baby.”
Stuart Mays and Charlene Howard want to launch a charity to help other families in a similar situation.
Mr Mays said: “There will be families who cannot afford the cost of private medical help – and without it there is every chance their child’s head will not regain a natural shape. That could have a huge impact on their lives.”
A fete with charity football match is to be staged at Sizewell FC on August 1 from noon to 4pm to raise money.