Thursday, 30 October 2008

Baby refused NHS treatment

Baby Byron was born with a condition called plagiocephaly - also known as flat-head-syndrome - which means his skull dents and becomes mis-shapen even when just slight pressure is put on it.

Even just laying on the same part of his head can cause it to change shape.

Hi family say he was fine when he was born, but as time went by they noticed there was a dent appearing in one side of his head and a bump growing on the opposite side.

His aunt Leanne Aspinnal who lives in Eastfield described it.

"It looks like he's been hit in the head with a brick on one side, but raised up on the other."

Byron was taken to hospital to see a paediatrician and they confirmed he had the condition.

Leanne continued, "All they did was make sure he could turn his neck, as sometimes babies can get stiff necks because of it."

"We were told not to worry about it and that his hair would grow over it, but the thing is it's not just a little bit of a funny shape...it's awful."

They were also told there shouldn't be any health worries for them to worry about, but Leanne isn't so sure.

"I spoke to another mother who has a child with the same condition and he now has to have specially made glasses because his eyes don't align because of the shape. At the very least he'll get bullied and then what happens when he goes bald when he's older?"

To re-shape his head back to normal a special helmet's needed that Byron would wear for twenty-three hours a day - without NHS help it's going to cost the family £2000 which they're desperately trying to raise.

But time is of the essence because the treatment needs to be done before Byron's 1-year-old, as that's when his skull will harden permanently into whatever shape it is at the time.

Leanne doesn't see why they can't have it done on the NHS.

"It's just a lottery and depends on what postcode you live in. If you live in Leeds the hospitals will do it. In Peterborough they're not willing to."

"At the end of the day the NHS fund a whole lot of things that's caused by what people have done to themselves, but a baby's born with a condition it can do nothing about - it is going to affect the way it lives and looks - and they won't do anything about it."

When asked why the treatment couldn't be provided, Peterborough's NHS Trust released the following statement:

The use of specialist helmets for the treatment of plagiocephaly is not standard practice within the NHS and is not routinely commissioned by primary care trusts. In the absence of NHS guidelines on their application, NHS Peterborough reviews each request through its Exceptional Cases panel on an individual case by case basis.

To date NHS Peterborough has not funded an application for specialist helmets for the treatment of plagiocephaly as there has been no specialist clinical support for these individual applications. Clinical support would need to come, for example, from an NHS consultant paediatrician.


If you would like to donate anything to the family to help with Byron's treatment, please call his aunt Leanne on 01733 315 386 or 07857 346 573.

Source: Hereward FM