Kate Fisher and partner Alex Gleghorn had to pay privately for a special device to help correct 18-month-old Matilda's plagiocephaly – also known as flat head syndrome – after being told the treatment was not funded by the health service.

The worried parents, from Mirfield, say the condition, as well as being unsightly, can cause headaches and ear and eye problems and could also store up problems for Matilda in later life, including leaving her not being able to wear glasses.

The NHS, however, argue that the syndrome is merely "cosmetic."
Determined to get help for their daughter, Kate, 22, and Alex, 24, found the money to pay privately.

Matilda was fitted with the special Starband device three months ago and Kate and Alex are delighted with her progress.

But they are furious that they and other parents like them – it is estimated that plagiocephaly in one form or another affects as many as one in 30 babies – are being denied what they consider basic healthcare.

On Monday, Kate and Matilda will travel to 10 Downing Street to hand over a 5,000-name petition calling for the Starband and other treatments like it to be made available on the NHS.

Kate said: "If your child needs help, whatever that is, they should be able to get it."

Matilda, who has a twin brother Harry, was born with brachycephaly, a form of plagiocephaly. It is thought she developed the syndrome because she spent a long time in the birth canal.

The condition meant that Matilda's head was wider than it was long. Many babies born with the condition ultimately grow out of it but Matilda did not.

Kate and Alex say they were told by doctors at Dewsbury Hospital that nothing could be done but after researching the condition on the internet they found out about the Starband, a crash helmet-style hat that Matilda now wears for 23 hours a day. The US-invented Starband works by moulding itself perfectly to a baby's head.

It allows more room for growth in some parts than others, hopefully restoring the head to a more normal shape as the baby gets older.
Kate said as well as campaigning for funding to be made available she also wants to raise awareness of the condition.

Since Matilda's diagnosis she has discovered that in some areas – Leeds and Bristol – similar treatment to the Starband is available on the NHS but only for babies up to the age of six months.

Kate believes had she been told about the treatment Matilda might have seen even greater improvement. Kate, who works in advertising, said: "We want the treatment to be free for all who need it – and for doctors to actually acknowledge there is a problem.

"If no funding is available then they should at least tell you that you can go private, then you have the choice.

"I feel if we had known about the Starband earlier Matilda's head might have eventually been normal. Now although it's better, it will never be perfect."

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