'My daughter can't walk yet'

By Jane Elliott
Health reporter, BBC News

Sophie spent four months in plaster

Sophie Chandler's siblings were both walking by the age of one but she will not walk before she is two.

Her mother, Tina, thinks this might have been avoided with better health screening.

For Sophie, aged 21 months, has developmental dysplasia of the hip (DDH) - a condition in which the ball and socket of the hip do not develop properly.

Tina said she feels desperately sorry for her daughter who spent four months in plaster, unable to run around with her siblings or even have a bath.

"The casts really do smell after they have been on a couple of weeks and it is really difficult while they are in nappies," she said.

"Once Sophie had a nasty reaction to urine that had managed to seep into the cast and she had large red sores and blisters under the cast.

"It has been an ordeal to try to keep Sophie's cast dry from urine, sweat etc and numerous times have been had to get the hair dryer out, Sophie has now got a phobia about hair dryers!"

Deformity

Hip dysplasia is diagnosed in up to 2,000 babies and children each year.

But left undetected and untreated, it can lead to deformity and disability.

A recent report by the charity, Steps, shows that more than half of England's primary care trusts have no policy in place to screen newborns for hip problems - although they say this does not mean they do not check.

An X-ray of a woman with hip dysplasia

Sophie, from Suffolk, was actually screened at six weeks, but doctors found nothing.

Her mother feels that a more thorough check or scan might have shown up the problem.

She says her daughter was then not examined again until she was more than a year old - and by then the damage had been done.

"It was only when she went for her yearly development that the health visitor noticed that she had different creases on the inside of her thigh and her legs were different lengths," she said.

"The NHS were then brilliant. We got referred to a consultant within two weeks and then she was in for surgery within three and a half weeks of that.

"But it could have been picked up at birth.

Developmental Dysplasia of the Hip (DDH) DDH is not just one condition but describes a range of conditions from mild instability and/or immaturity to the severe end of the spectrum where the hip is totally dislocated Up to 2,000 babies a year need treatment - the later the condition is detected the more complex the treatment DDH underlies up to 9% of all primary hip replacements and up to 29% of those people aged less than 60 years All babies should have a hip check at birth and at about six to eight weeks

"If they had picked it up earlier she would almost certainly not have needed surgery, instead they would have put her into a cast or brace.

"Even if she had been picked up at an early stage there is no guarantee that she would have been okay but there is a bigger chance.

"And the longer the problem is left, the more chance there is of surgery not being successful."

Disability

Her cast is now off and her joint slowly repairing but Tina feels that as her mother she should perhaps have spotted the problem.

"I did not know what to look out for and you would think with it being my third child I might possibly know," she said.

Steps founder Sue Banton said she wanted to see better diagnosis for children like Sophie.

"I have been hearing stories like this for 29 years - so little seems to have changed," she said.

"Too many children are being diagnosed after walking age, resulting in hospital stays and operations.

"Some children develop a permanent disability from what is essentially an easily treatable condition."

Sue said she would like to see health organisations develop much more effective protocols for diagnosing and treating the condition.

Andreas Roposch, an orthopaedic surgeon and epidemiologist at Great Ormond Street Hospital, said the hips should be routinely checked in all newborns.

He said most problems would be picked up at that routine six-week check, but sometimes an ultrasound examination was required.

"Hip dysplasia can be very subtle at birth, but can get worse and worse ending in dislocation if it is missed.

"Ultrasound can be done to visualize the hips and this can help detection.

"There is not enough evidence that every baby should have an ultrasound, but it should be carried out where there are worries.

"The national guidance about the screening are sound but it is whether how the guidelines are followed can depend on where you live. "