A Mummys View

Telling it like it is

Would my disability run in the family???

on April 26, 2012

So if you have read some of my other blog posts you will know that I have a disability. I was born with Developmental Dysplasia of the Hip (DDH) and have had 9 operations on my legs and hips over the years, including a leg lengthening operation.

Developmental dysplasia of the hip (DDH) is when the ball and socket do not fit snugly together.  According the the charity STEPS about 1 or 2 in every 1,000 babies has a hip problem that requires treatment and there are varying degrees of severity, some will just have immature hips that correct themselves, others will have DDH and require treatment.

I had to undergo a significant amount of treatment and ended up on all kinds of traction and with various plasters and splints within hours of being born as some of the below pics show. (I think I hung in every position possible!)

Unfortunately for me, things weren’t as advanced back then and over the years things didn’t always go according to plan, as a result I still have problems and my mobility in recent years has deteriorated. I don’t let it hinder me much though and as you can see from my blog I have gone on to marry and have a lovely daughter with my caring hubby.

Because of my history though my little girl had to have a scan of her hips a few weeks after she was born to check that she was ok, as there is a genetic link that means DDH can be hereditary and there’s also an increased chance in breech birth‘s (which she was too). It was a very worrying time, especially with all that had happened to me. My friends and family were probably as nervous as we were to know if she had been passed the same problem down the line. (My niece has also just had to be scanned because of the family link too.)

The day came for the scan at the hospital and we were led into a room in the xray department for an ultrasound style scan. The team that greeted us and carried out the scan were fantastic, it took hardly no time at all and thankfully we were told there and then that everything appeared normal. (Thankfully my niece has been given the all clear too.)

I was so pleased that my little girl won’t have to go through any of the things that I did. However I know that had we received different news we would have managed. The medical advancements now are much better and as a result fewer children go on to have further problems, most are corrected very early on.

However I wanted to share my story with you to make people aware of the importance of monitoring things like limb development etc in the early weeks, months and years.

ALL babies’ hips are checked at birth and at 6-8 weeks as part of a national screening programme called the Newborn Infant Physical Examination (NIPE).  However the physical examination is not 100% accurate as this only detects hip instability at the time of the examination. This means that some babies might appear to be normal at the tests but develop problems later or that DDH has not been picked up at the initial examination. As formal checks finish after the 6-8 week check, parents or grandparents are often best at noticing signs of a hip problem.

If you notice any of these signs you should contact your health professional as soon as possible to be referred to an orthopaedic specialist for an ultrasound or xray to confirm a diagnosis of DDH:

  • Deep unequal creases in the buttocks or thighs
  • When changing a nappy one leg does not seem to move outwards as fully as the other or both legs seem restricted
  • Your child crawls with one leg dragging
  • Inequality in leg length
  • A limp if one leg is affected or abnormal ‘waddling’ walk if both hips are affected.
  • Do remember that a hip not properly in joint does not hurt in childhood.

The above information was taken from the charity STEPS website. Should you have to have any concerns, have to have further tests for your child, or receive news that they have some form of lower limb problem, then  STEPS can be an enormous support. My family and I have had links with them since I was a toddler and still keep up to date with their work now, many years down the line. They offer advice, guidance and support to individuals, families and carers in what can be a confusing time.

As I have been getting to know other parent bloggers and checking out their blogs I have come across a couple of lovely mummy bloggers who are going through similar things at present, Emma from Emma and three and Molly from Mother’s Always Right both have stories to share and their children are gorgeous, courageous, outgoing little people who despite being held back a little with their mobility at this point in time are still living life to the full and enjoying exploring the world around them. I have no doubt that whilst things are hard for them at present and frustrating for all concerned it won’t be long before their little ones are chasing down their playmates and I look forward to reading all about it as their stories hit a very personal note for me.

15 responses to “Would my disability run in the family???

  1. My daughter was born with hip dysplasia and wore a brace for the first 6 months of her life. With the problem apparently corrected, she was fine until her late teens. After years of playing soccer, the pain in her hips became unbearable at times, making it difficult for her to walk. After numerous x-rays, and a CT scan, they found that her legs are indeed different lengths because of her hip problems. When she returns from university this summer, more investigation will be done, and hopefully there will be better answers other than physiotherapy.

    • amummysview says:

      Oh no! After all that time? I had the Ilazarov frame (I think that’s how you spell it) on my leg when I was in my early teens as my left leg was an inch and a half shorter than the other due to my hip probs. It is now about a quarter inch difference and I wear a raise in my shoe. This can help. Also, has she had physio massage? reason I ask is I was in agony a few years ago and could hardly move without yelping in pain and I went to a physio recommended to me and they helped release tension in my hip flexors that had built up (often hip flexors can be affected because the hips are misaligned and they pull everything out of line). I hope she is ok but please feel free to message or email me if I can help or offer any advice xxx

      • Thank you. Physio helps her and doesn’t help her. Hopefully more can be found out this summer when she returns from University.

      • amummysview says:

        Hope so. I know basic physio never did much for me but the massage of these muscles, ligaments (whatever they are) just really released a hell of a lot of tension and pain. Like I say please feel free to message me even if to pick brain xxx

  2. Molly says:

    Really informative post. Thank you for the mention. It’s true, our daughter’s are hugely determined. They’ll get there in the end!

  3. What a brilliant post to have written. It breaks my heart a little seeing the pictures of a very cute little you going through all that stuff, but warms my heart to hear that your daughter won’t have to go through any of it and hopefully this post will help any parents who might have a concern, to spot something early and get help for their child xxx

    • amummysview says:

      Thank you lovely lady. I think it totally broke my mum’s heart too. However as I have said it has made me the person I am today and that’s good (or at least I hope! lol!) My story is a lot more detailed and complicated over decades so I kept to the point! lol! After reading Emma and Molly’s stories I wanted to share my experience and help raise awareness and support x

  4. ecbradley says:

    Thanks hun for both highlighting DDH and sharing your pictures – which kinda scared the hell out of me! Thank goodness Erin didn’t have traction!! The newborn checks only detect a very small minority. Most docs never diagnose a case by feeling alone. Its only the very obvious ones that are picked up this way. Fab post for highlighting DDH

  5. emma says:

    Your pictures scare me! Thank goodness Erin hasn’t had traction. I am so glad your own little girl was clear, what I don’t think others realise is that the newborn check has a really really low detection rate and the longer its left undiagnosed the more invasive the treatment.

    • amummysview says:

      exactly! That’s why I thought I would share my story (in a very very very shortened version!). I was wary though as I didn’t want to worry you. My case was so extreme you wouldn’t believe. I know so many people who have been totally fine (and I am not just saying that). I was unlucky. It’s made me the person I am today though so that’s good hopefully! lol! I enjoy reading your blog and seeing how she is coming along I was thrilled with her first steps video. Keep your chin up, keep positive, all will be fine, things are very very different now and your little girl is gorgeous and doing so so well xxx

  6. Special Needs Mum says:

    My son was born with unstable hips and had to wear a splint for 10 weeks. He also has lax ligaments. I’m now working for DysNet, the new European network for people with limb differences and we are hoping STEPS will join us as a member. We’re soon launching a new website and a RareConnect community – do join us and share your experience and expertise! Tania

  7. […] by the University of Cambridge. Those who read my blog regularly will have read my posts such as Would My Disability Run in The Family? and Hobbling in Through Pregnancy Pains and Temper Tantrums and will therefore know that I am […]

  8. […] I had my first daughter I wrote a post entitled Would My Disability Run in the Family? which talked about my experiences as a child through to today and my eldest daughter having to […]

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