Getting Zoe on her feet

How do you manage at meal times when you can't get her into her high chair any more and what about nappies?

These were just some of the problems facing County Durham mother Louise Jackson when her seven-month-old daughter Zoe was allowed home from hospital after being diagnosed with congenital displacement of the hip (CDH), known in the North-East as "clicky hip."

Zoe appeared to be a perfectly normal, healthy baby when she was born to proud parents Louise and Ronan Jackson, the couple's first.

"She was checked for problems when she was born and then checked again after six weeks. Everything seemed to be fine," says Louise, who lives in the village of Edmundbyers near Derwent reservoir.

At the next regular health check the health visitor though she could hear an unusual clicking from Zoe's left hip. Louise was referred to her GP that same afternoon and he heard another clicking sound in Zoe's right hip.

It was explained to Louise that the clicking sound might mean there was a potentially serious problem with her baby's hips.

The next step was a visit to Dryburn Hospital in Durham to see a specialist. At first the consultant could not make a positive diagnosis but after an ultrasound scan it became more likely that a diagnosis of CDH would be made.

"They sent us for an x-ray which was conclusive," Louise remembers. "The x-rays showed that both of her hips were dislocated. It meant that the bones at the top of her legs were trying to calcify to the wrong place on her hips, which would have meant she would have been lopsided when she learnt to walk."

Some five years on, Louise can now be philosophical about it all but at the time she remembers being frightened and upset. While she was impressed at the speed of action, she still regrets that the condition was not picked up at birth or at the six week health check.

"The sooner they pick the condition up the quicker it will be sorted out. In Zoe's case, it wasn't picked up until she was seven-months-old. But I know they are getting better at diagnosing CDH all the time," she says.

According to the charity STEPS, the National Association for Children with Lower Limb Abnormalities, one or two babies in every hundred are born with some kind of hip problem.

Some babies may grow out of a mild instability without treatment but because there is still no way of knowing which hips will come right on their own, all babies diagnosed as having a hip problem will be monitored and treatment offered if necessary. Without treatment, the growth of the hip may be affected and there will be a much greater risk of developing osteoarthritis later in life.

In Zoe's case, the diagnosis was at the more serious end of the condition, requiring intensive treatment, including a series of operations to manipulate her growing legs.

STEPS estimates that CDH affects one in a thousand babies and around 900 babies are diagnosed with the condition in the UK every year.

At first, her parents were upset at what lay ahead for their baby daughter but when it was explained to them that there is a high success rate in such treatment, they got on with the task.

The first step was three weeks of traction on her legs, to make it easier for surgeons to manipulate them on the operating theatre. Zoe was then encased in thick plaster to try to train her rapidly growing limbs.

"The plaster went from under her shoulders to her ankles, with a gap for nappies," recalls Louise who now has two more children, Rory, six, and Orla, ten months.

"She was left sitting with her legs drawn up, like a frog. It looked very odd."

Apart from the practical difficulties, Louise was worried about the effects on her daughter, but she needn't have been.

"It was amazing really. I suppose she didn't know any difference. For Zoe, this was normal."

While babies might not like being handled and examined, STEPS experts say they do not usually find hip problems painful. Once Zoe was home it became apparent that life was going to be interesting for a while. "But, how do you bath them at home, what do you do with nappies? It is all of these things and more," recalls Louise.

While Louise says the family would have managed on their own, she is very grateful to STEPS. "I happened to meet a woman whose son was a year ahead of Zoe in terms of the development of his condition. She came to see me because she knew there was another child with CDH on the ward. She wanted to pass on a few tips which is typical of how STEPS works as a charity," says Louise.

"They were brilliant in the way they provided support and assistance to parents. They gave me practical back-up while the hospital was dealing with the medical side of things."

Zoe was in plaster continuously from November 1995 to July 1996.

Every six weeks she was admitted to Dryburn to have the plaster removed, her limbs manipulated and encased with a new set of plaster and Zoe had to have general anaesthetic.

Despite the inconvenience and the stress, Zoe seemed to sail through her tribulations. "She didn't put up any sort of fuss. She even learnt to crawl around the place in her plaster. She developed the most enormous biceps from pulling this weight along. You had to be careful, you wouldn't have wanted to have had a left hook from her," says Louise.

In the July, the doctors removed the plaster for six weeks to see how her legs were doing. The left hip plaster had done its job and Zoe's bones were knitting in the right place but the right hip needed more attention.

So, at the beginning of September, she went back into hospital where she had her right hip pinned and more plaster.

"She was like that until the following December. It took an incredibly long time - 18 months altogether. She was two when she finally come out of the plaster," remembers Louise.

After her trials and tribulations, Zoe had her pin removed and the last plaster taken off in December 1996.

"When they took the pin out she was fine. The problem was solved and since that period we have been going back and forward for check-ups. She is developing normally now," says Louise.

Now a six-year-old schoolgirl, Zoe has come through unscathed and she can't remember anything about her ordeal.

Louise was so impressed by the help she and her husband got from STEPS that she is now an active member. And this weekend STEPS is in Newcastle for a two-day national conference and Louise will be helping to organise events.

On Saturday, experts will speak to parents and professionals and, in the evening, members and friends will gather for a special 21st anniversary dinner dance. Sunday will feature parent workshops and the STEPS annual meeting.

"There's a medical conference going on at the Posthouse Hotel but I've organised a day out at the Beamish Museum, more of a fun thing," says Louise.

Apart from Zoe's yearly check-up, the only permanent reminder is a scar on her right hip.

"She has a scar about four inches long," says Louise. "It will come just above her bikini line - when she gets to that stage!"