NHS refuses to fund corrective surgical helmet for four-month-old baby with “flat head syndrome”

Baby Rubee Scrivener, who has Plagiocephaly, also known as flat head syndrome, with mum Tina Scriven

Baby Rubee Scrivener, who has Plagiocephaly, also known as flat head syndrome, with mum Tina Scrivener, at their home in St Ives, - Credit: Archant

The parents of a four-month-old baby girl are facing a race against time to fund the cost of a special surgical helmet for their daughter – because the treatment is not available on the NHS.

Tina Scrivener, aged 26, and her partner Andrew Phelps, of Houghton Road, St Ives, have been told the corrective device is considered cosmetic and they will have to pay £1,950 for it. But they have just weeks to raise the money as baby Rubee, who has a condition called plagiocephaly, also known as “flat head syndrome” could suffer permanent damage and disfigurement without it.

Rubee was born on April 12, and although she seemed to be developing normally, Tina, who has six other children, noticed that her head seemed to be misshapen.

She consulted her GP at the Northcote House Surgery, in St Ives, and was referred to Hinchingbrooke Hospital for further tests.

A few weeks ago, paediatric consultant Dr Nik Johnson broke the news that Rubee has plagiocephaly and referred her to the Joint Craniofacial Clinic at Oxford’s John Radcliffe Hospital.

On Friday, the diagnosis was confirmed as severe plagiocephaly and while some babies do recover from the condition without inter-vention, Rubee is becoming disfigured and this could affect her hearing and future development.

“The consultant has noted that Rubee’s head is flat and causing the left side to be pushed out, her ears are uneven, one eye is squinting and her forehead is starting to come out,” said Tina.

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“We have followed advice with regards to positioning her head during the day and when she is sleeping but it has not improved her condition.”

Tina says the family would struggle to find the money themselves, but it is hoped that Rubee will only need one helmet, which she will wear for six months for 23 hours a day.

“We are currently trying to raise the money which is the minimum required, unfortunately we cannot pay for this ourselves. Rubee needs the helmet urgently, in days, at the most weeks, for her to benefit,” explained Tina.

“We worry about Rubee’s future, not just how she looks but her happiness as well. Other children can be very cruel. Our friends and family have been truly wonderful in the last day or so and are rallying around. Surely when the NHS can provide breast reconstruction surgery and other such operations for people, which one would argue is also cosmetic, why can they not do this for a baby?”

The Cambridgeshire and Peterborough Clinical Group, which makes funding decisions, said: “This is a relatively common condition and not usually a cause for concern. There is not enough evidence to show helmets are more effective than the advice on positioning.”