DDH: Alex's story

How do you and your partner feel?
At the time, I was absolutely devastated. Dan (my partner) had to calm me down a lot. The day we found out about the cast, my mum came to the appointment as Dan was working, I cried all the way home and for ages. Before Alex got her cast, I suffered with panic attacks about how I'd cope.

Were you referred to a specialist?
Yes, an orthopaedic surgeon, in University Hospital of North Durham. He was fantastic.

What other information were you given?
Nothing. With the harness, we were told she was allowed to have a bath two or three times a week. With the cast, they told us she needed it, but we were never told anything else. We got home and I looked up spica cast on Google. What a mistake! All I read were horror stories about how the casts were so heavy and cumbersome, the babies were so unhappy in them, everything was awful.

Was the medical community clued up on DDH?
Yes and no. The nurse, who looked after Alex when she got her cast acted like it was the first cast she'd ever seen one and she didn't have a clue about anything. We asked about a car seat because she wouldn't fit into her normal one and the nurse told us to take her home on our lap.

Our GP was helpful, but our health visitors hadn't seen a cast either. Alex had a urine infection in January, and the doctors in A&E and on the children's wards all asked what Alex had done to her legs.

What did the treatment for Alex entail and how long did it go on for?
She had the Pavlik harness for 11 weeks, then the spica cast for five and a half months months. The harness was simply a fabric contraption. It was fitted while she was awake, but the cast needed to be fitted and removed under anaesthetic.

Before the first cast, she needed an arthogram (dye injected into the socket), which would show whether she would require open or closed reduction. She needed closed reduction, which is where the hip is manipulated into the socket without making an incision.

She had the first cast for 10 weeks with an x-ray five weeks in. The second cast was bright pink and because only one hip was affected, the cast was above her knee on the good leg. That cast was on for 11 weeks and halfway through she had a check-up where we were told, if all looked good, it would be removed soon. In March, the cast was removed under anaesthetic. She then had to wear a night brace for three months.

How is she doing now?
Fantastically! She took her first steps in June - at the top of the Sears Tower in Chicago! She sat up unaided the day after the cast was removed. At her last check-up, the consultant said he was really pleased with her progress and the hip looked great. She now has to have yearly check-ups.

Do you think enough people are aware of the condition?
I think people who know someone with the condition know, but otherwise people don't have a clue. We got so many stares when Alex had the cast and even the harness too. I think a lot of people thought we'd hurt Alex when she had the cast.

What advice would you give to someone who has just discovered their baby has DDH?
It is not as bad as it looks and not to believe everything you read. All the stories I read horrified me, but Alex was the happiest, smiliest baby with her cast, she never ever let it stop her, she found a way to crawl, she stood up, she cruised, she kept us going with her smiles.

And to add, that there is actually a lot of help available, it's just not known about. Since coming out of the cast we've found out that Alex should have been offered free nappies, she could have received disabled living allowance, and now, thanks to a campaign by two mums with babies with DDH, children under three can get a blue badge for parking.

For more information about DDH and other hip or lower limb problems visit www.steps-charity.org.uk. Baby Hip Health Week runs from 24th February to 1st March 2008.

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