Mum vows to raise awareness of son's condition (From Swindon Advertiser)

Mum vows to raise awareness of son's condition

8:28am Monday 14th May 2007 in News By Emily Walker

BABY Kieran's misshapen head could lead to lead to problems with his hearing and teeth, but his mother is worried that parents do not know about the preventable condition.

Six-month old Kieran Seagroatt was born perfectly healthy, but developed a condition called plagiocephaly, meaning his skull is twisted.

Kieran's mum, Katherine Rose, said that she became concerned when she noticed a lump, but doctors said there was nothing to worry about.

"Kieran's skull is twisted. He has got one ear 17mm more forward than the other," said Katherine.

"The NHS doesn't recognise it as a medical condition and only pays for it in very rare cases where the skull is deformed during childbirth.

"The treatment costs around £2,000 a time, and because we can't get it on the NHS we have to travel to Cardiff every three weeks.

"If it is not treated he could have severe teething problems, problems with jaw misalignment or a perforated ear drum because his ear is squashed.

"These children are more likely to suffer from ear infections and a lot of these children could never wear a cycling helmet because they won't fit on their heads."

Cardiff doctors fitted Kieran with a special helmet to encourage his skull to grow more evenly.

Katherine, of Fitwell Road in Redhouse, said Kieran and other babies like him developed the skull deforming condition because they slept on their backs.

"Everyone is always told to put babies on their backs at night to protect against cot death, which is good, but very few people know about this.

"It is easily preventable if babies are on their front during the day and moved into different positions.

"I had never heard anything about it before we found out Kieran had it."

Katherine noticed a lump on his head when he was six weeks old.

She was told he would most likely grow out of it by the time he was two.

But after speaking to the parents of other children with plagiocephaly and brachycephaly, where the head is flattened at the back, she learned that there was a chance it could stick with Kieran for life if not treated.

"I didn't want to wait until he was two to see if it would go away on its own, by that time it would be too late to fix it if it wasn't," said Katherine.

"Health visitors are not educated about it, so couldn't give me any advice.

"I really think parents need to be told about it."

Katherine has started a petition to make people more aware of the condition and hopes to get the NHS to fund expensive treatment, and said she wanted to thank North Swindon MP Michael Wills for his help.

Almost 400 people have added their names to the online petition in the last week.

To sign the petition visit http://petitions.pm.gov.uk/PlagioBrachy/