Preventing late diagnosis of Hip Dysplasia

When BB and I first met the man who was to gently cut open her skin and surgically correct her hip, it was the first time that I really felt the sting of being caught ‘late’ with Hip Dysplasia.

He explained that in his hospital she would have had an ultrasound at birth, we would have had a stronger change of her left hip being caught within a week of being born.

The treatment would have been far different.

One in twenty babies are born with weak hips, these are the ones that in my opinion, should not go in baby carriers that don’t support baby at the hip – allowing the frog like position to be naturally assumed.  They shouldn’t be swaddled tightly to prevent free movement of the leg, they should be in a wide car seat and allowed to extend their legs wherever possible without any undue pressure on the joint.  It you have a weak joint, it seems obvious that not giving it support will exasperate the condition.

‘Clicky hips’ has been ‘cured’ by wearing baby in a well fitting sling (that embraces the frog position) and by wearing double nappies or thick natural nappies that force the legs out and stabilise the hips.  When more aggressive correction is needed at birth, it is done by a non surgical process, where baby wears a harness to keeps the hips in place.

My most recent post on baby carriers reached almost a million people, this tells me that people are interested in caring for their babies hips.

Out of those one in twenty babies, according to the International Hip Dysplasia Institute, 2-3 of every 1000 infants will need treatment.  Any parent with a baby who has been diagnosed with clicky hips, dislocation, and Hip Dysplasia will tell you that the sooner it is caught, the better.

To date BB has had one operation, four general anesthetics, one blood transfusion, and countless physio appointments.  We still see DDH in her walk, in her limp and in her weak hip.

I am a mum to a baby who was diagnosed late, we didn’t have a ultrasound, we were never informed that her hips clicked or clunked.  We were advised that her delay in sitting, crawling and walking was normal for a third child.

This is until we met the surgeon who told us it wouldn’t have happened in his hospital because of the policy on ultrasounds.

My point?

If babies were scanned at birth, less cases of DDH would be caught late and more would be be managed without surgery and without the hell of the 3 month spica cast.

My daughters’ children stand a higher risk of having Hip Dysplasia, please help them by signing this online petition to scan all babies at birth for signs of Hip Dysplasia.  It is a horrific condition and we live with its legacy every day.

Take a moment, read the petition, please sign. Then share wherever you can.

Thank you.

BB – post surgery – still smiling 

spica

 

 

12 thoughts on “Preventing late diagnosis of Hip Dysplasia”

  1. Great post and so important to raise awareness. At my little boys 10 month check they picked up he had unequal leg creases, a possible indicator of DDH. He had been a very reluctant walker so we were immediately referred to the gp and then the hospital consultant. We had a 2 month wait before his scan at the hospital so spent that time researching DDH. I’d wake in the middle of the night panicking about how he’d sit, sleep, be in a buggy whilst wearing the spica cast and that was before I’d even though about the operation. The scan was on his 1st birthday and we got the all clear. A huge relief, but a friend of mines little girl had DDH, and saw everything she went through. So hard, my thoughts are with you and your little girl. Hoping the time passes quickly for you xx

  2. Gosh how awful for you all to go through.

    I was lucky that my daughter was caught at birth and then refered for an ultrasound early. She wore a harness for 3 months which wasn’t really a problem once you got used to it. Thankfully it was fully cured and she has had no continuing problems.

    I have signed the petition and hoepfully this is something that can be worked towards.

    In the meantime I do think there should be more thorough screening at birth and those at risk should have a scan. All babies should be checked by the doctor at hospital to see if there is an instability. If there is a family history or risk factors these babies should be scanned as well.
    There should definitely be more awareness in health professionals and advice to parents as well.

  3. This is a fantastic post Jane and well done on raising awareness for DDH. As you may know Mads was born breech so had what we thought was a routine ultrasound at 6 weeks. It was there they flagged up that both her left and right (but more her left) hips were unstable. We were given the option of trying a pavlik harness or going down the less traditional double nappies route- which we decided to try. About 3 months ago, at aged 2.5 she was finally discharged from hospital with perfect hips. She wore double nappies for six months, had monthly ultrasounds until she was one, and then x rays every six months until she got discharged. I can honestly say that the routine ultrasound saved her hips as the health visitors didn’t notice her unusual leg creases at her check up’s.
    LL had a routine ultrasound at six weeks as well, due to Mads, and she was given the all clear. We were in and out in 5 minutes. I am well aware it would cost a lot to the NHS to screen every baby but it is so important- and prevents far more cost, horrible experiences and pain down the line as your poor little girl had to find out.

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  5. Hi

    I know this was posted a few years ago but I just wanted to share my story and a little positivity. I was diagnosed very late with DDH (6 years old) and underwent a lot of surgery. However I am now a happy healthy and active 33 year old (with a very active toddler) 🙂

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