04/09/2014 13:05 BST | Updated 22/05/2015 06:12 BST

Hip Dysplasia: Two Mothers Explain How Their Babies Were Diagnosed And The Treatment Involved

Hip dysplasia: Two mums' stories

Hip dysplasia, also known as developmental displacement of the hip (DDH), is fairly rare - two to three babies in every 1,000. But when it occurs it can mean a lengthy course of treatment to try to correct the problem, and the early it's diagnosed the better.

Here, two mums discuss the experiences they've had with their own daughters. Jane Blackmore, aka Northern Mum (one of this year's winners at the MAD Blog Awards sponsored by Parentdish), is mum to Libby-Sue, two, and Emma Bradley, who blogs at Emma and Three, is mum to Erin, who is nearly three.

When did you first suspect that your daughters had DDH?

Jane: It was coming up to Christmas last year. Libs had just started walking at 19 months and we were laughing at the fact she walked a little lopsided – she was previously a bum shuffler and we thought it was related. My husband said: "What if her legs are different lengths?" We laid her down and it was suddenly obvious there was a difference of about 2-3cm. We felt like such fools for not noticing before. Five minutes on Google and I was convinced it was DDH.

Emma: I knew something wasn't right with Erin at about 14 months. She was still showing no signs of walking or even moving about much. She didn't crawl until 11 months. Eventually, at 20 months, she started walking – but it was with an obvious limp.

And what was your experience of getting it diagnosed?

Emma: A slow process! I had kept on and on mentioning her lack of mobility to our doctor and health visitor and they kept saying it would come. Then finally she was referred to a physio, who noticed her legs were different lengths. Next she was referred to orthortics, then to a paediatrician. We had to wait about three weeks to see him, but he diagnosed Erin within two minutes, just from watching her walking – he didn't even need to do a physical examination. She was sent for an immediate x-ray and the paediatrician called me the next morning to confirm DDH. She was referred to orthopaedics then, which took yet another three weeks, and her treatment started another three weeks after that. I was getting so angry and frustrated at how long everything was taking.

Jane: Very luckily for us, we had private health care – when I went to my own GP, he laughed when I said I had researched it myself, and said DDH was very unlikely because it would have been picked up during Libs' normal health checks. If we'd had to wait for an NHS appointment, Libby-Sue would have been two before being referred, which would have made the process even harder. As it was, our private health was great. She had x-rays straight away and surgery seven weeks later.

Hip dysplasia: Two mums' stories

What treatment have the children had so far?

Emma: Erin had a closed reduction [where the ball is manipulated back into the socket] under general anaesthetic, then spent 18 weeks in spica – she was cast from her belly button to her ankles. She had to go under general anaesthetic every six weeks to be re-cast due to her growth. After the 18 weeks, she had a 10-week break before another four-hour operation, called a salters osteotomy, which included a bone graft because her hip socket was so shallow. Her hip was pinned and then she was cast for a further six weeks. When those six weeks were up, she had yet another general anaesthetic, the pins were removed and the spica sawn off.

Jane: Libs had a pemberton osteotomy [also to make the socket deeper], which is required for advanced cases of DDH following late diagnosis. After the operation she had a week in hospital – during which she needed a blood transfusion and had febrile convulsions. She spent 11 weeks in a spica cast, which was changed after six weeks under another general anaesthetic. When the spica was finally removed, she promptly broke her leg – and we had to spent another week in hospital.

What's the prognosis for both of them now? Is treatment ongoing?

Jane: It is. Libs will have x-rays every six months and I'm trying to sort out some physio because she still has a discernible limp. But she has learned to walk again and she's such a determined little mite! While she was in spica, she was really quiet and her speech didn't change much from that of an 18-month-old, but now her legs are suddenly free and she's walking and talking and desperately trying to jump. She still gets muscular pain, and she can't run or climb ladders – I worry like mad over her, but she doesn't even notice!

Emma: Yes, Erin's treatment is ongoing, too, because she still limps and she's behind in terms of gross motor development – she can't jump or run. She's just about mastered going upstairs, but can't go down. She'll have to remain under consultant care all throughout her growing years. She's getting stronger now, but she still tires quicker than her peers. At some stage she might need further treatment because we still don't know if her hip socket will develop normally.

Any advice for parents who think their child might have DDH?

Emma: I'd say trust your instincts and insist on an x-ray if they're older than six months, or an ultrasound if they are younger. Look for the markers and point them out to your GP. Erin never wanted to weight bear and would lift her legs up to avoid putting them on the floor. Look for a difference in leg length and additional creases on the thigh – all creases should be symmetrical. Also, don't feel guilty. You can't change things, so harness your energy to find solutions and ensure that treatment is started.

Jane: I agree. Push, push and push harder – the sooner DDH is caught the better. It is so rare and I think some GPs might not even know what an out of joint hip feels like.

Finally, what would you say is important for parents to know about DDH?

Emma: In terms of prevention, don't swaddle too tightly, a baby's legs need to be able to move. And use an infant carrier or sling that keeps their hips in an optimal position. Steps is an invaluable charity if your child is diagnosed.

Jane: I would only ever use an ERGObaby now – it's so important to keep your baby's hips wide apart.

You can read more about DDH on Parentdish here.

And you can read more from both Jane and Emma, about their ongoing journeys with DDH, on their blogs: Northern Mum and Emma and Three.