Mirfield parents tell others ‘Do not wait to seek treatment’
Aug 1 2008 by Joanne Douglas, Huddersfield Daily Examiner
‘Do not wait to seek treatment’
A MIRFIELD couple say specialist treatment has had a massive impact on improving their daughter after she was born with a rare condition.
And they have urged other parents to act quickly if they ever have a child with the same problem.
Kate Fisher and Alex Gleghorn had premature twins, Matilda and Harry, and at first there were fears they could have cystic fibrosis.
They waited anxiously for the results which, thankfully, proved negative.
But it is a mis-shapen head that has since caused little Matilda problems.
The 18-month-old has brachycephaly – known as flat head syndrome – and needs to wear a helmet 23 hours a day.
The couple claim that if health workers had spotted it sooner, Matilda would be on her way to a perfectly-shaped head.
When she was 15-months-old her parents spent £2,000 on a special helmet called a Starband in a last-ditch bid to correct the problem.
In just two months it has already made an improvement to little Matilda’s head shape.
Her parents now want to highlight the issue among other parents.
Kate Fisher, 22, from Mirfield, said: “I could tell straightaway Matilda’s head was a different shape.
“But with the twins being in the special care baby unit all my energy went into that.
“It was only later on when her head wasn’t changing shape that I started pushing for more information.
“We thought it was too late for Matilda, but we found a private clinic which would mould a special helmet for her and it has made a difference already.
“If she’d have had it much sooner she would have an almost-perfect head shape.
“That’s why we want other parents to know about this Starband, because it needs to be done as soon as possible before their heads form.”
Matilda and twin Harry were born at Dewsbury and District Hospital six weeks early and Matilda developed brachycephaly because she spent a long time in the birthing canal.
Brachycephaly is a form of plagiocephaly, which causes people’s heads to be wider than longer.
It’s not just a cosmetic issue – it can lead to complications with eyesight – but wearing glasses would be impossible.
It would also mean Matilda couldn’t learn to ride a bike as she couldn’t wear a helmet.
Miss Fisher and Alex, 24, a mechanical engineer, are pleased they got the chance to correct Matilda’s problem.
Now they want other parents to be aware so that they can seek treatment at the earliest opportunity.
Miss Fisher added: “If only parents knew there was something they could do. I think most people would find £2,000 to pay for it, if only to give their children the chance.”
Kate launched a FacDon’t book group, which now has more than 900 members.
She also started an online petition calling on the government to provide more information to parents. Visit http://petitions.pm.gov.uk/Plagiocephaly/
What is brachycephaly?
Brachycephaly is where the head is disproportionately wide.
Parents are encouraged to alternate their baby’s position while they are awake to stop constant pressure on one area of the skull.
A skull-moulding helmet or band is able to change the shape of a young baby’s head.
Treatment works best for babies aged up to 16 months.