Parents’ fight for daughter with ‘flat head syndrome’
Ilfracombe parents have to find �2,000 for special helmet to help correct her baby’s condition.
AN Ilfracombe couple are facing a �2,000 bill for treatment they say will prevent their daughter from being disfigured for life but is not available on the NHS.
Sarah Brind and Wayne Gardener was shocked to discover six-and-a-half month old Kaydee had developed “flat head syndrome”, where a baby’s soft skull becomes flattened on one side.
The back of her head is almost completely flat, while her ears also appear skewed and the couple fear for her future health or risk of bullying when she goes to school.
With increasing numbers of cases across the country, private medical companies are supplying helmets or “loc-bands” intended to correct the condition – known as plagiocephaly or brachycephaly - but standard NHS advice insists it is cosmetic and likely to correct itself.
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It is usually caused by babies sleeping on their back for long periods, but all advice still urges parents to do this to reduce the risk of cot death.
After research, Sarah and Wayne decided to take Kaydee to a Bristol clinic run by London Orthotic Consultancy, even though as a low income family, �1,950 plus the extra cost for follow up appointments seemed a lot of money.
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“Up until last week I hadn’t even known about this condition,” said Sarah.
“The clinic did the head measurements and said Kaydee had it quite severely, with two of the three types. We were not expecting that, but it is affecting her eye socket, with the right so much bigger than the left.”
The family has scraped together money for a deposit and Kaydee’s helmet is expected to be ready within a couple of weeks. They now plan a series of fund raising events to gather the rest.
The helmet must be worn for 23 hours a day for at least six months, but because babies’ skulls soon harden as they grow older, treatment is said to be most effective between four and 12 months old.
“I had to act quickly in her best interests, because the longer it is left, the less chance there is of sorting it out,” said Sarah.
“I think it is wrong it’s not funded on the NHS, but the government are right in saying babies should sleep on their backs. But there should be more information about this, because not enough is out there.”
Opinion is divided about flat head syndrome – online NHS advice suggests it is cosmetic, will most likely correct itself and does not affect a child’s development.
It advises parents to ensure their baby sleeps on their back, but to give them “tummy time” during the day and encourage them to try new positions during play. They are also advised to switch the baby between a sloping chair, sling and flat surfaces so there is not constant pressure on one part of their head.
If anyone would like to help Sarah and Wayne, they can be contacted on 01271 863212. The family has set up a Facebook group called Helmet for Kaydee.
There will be a fund raising event at the Marlboro Club in Ilfracombe on the June 30 at 7.30pm, when Wayne and his friend Dom will be undergoing a waxing from the waist up, with all proceeds to Headstart 4 Babies.