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DDH: A letter to all expectant parents, or those of you with newborns

Dear expectant parents, or those of you with newborns,

I am sorry, I am that annoying woman, the one who wants to act like they know better than the health visitor, the one who always has something to say.

I act out of concern, out of wisdom, out of fifteen months of worry.

For fifteen months I have watched my two-year old daughter undergo intensive surgery, be bound in a half body cast and then learn to walk again.  I missed the toddling stage with her, she was never ‘into everything’, it took her so long to learn how to walk and when she finally did we operated on her and took that skill away.

My kid was a victim of late diagnosis of Hip Dysplasia.

DDH

Remember when you took your baby for a six-week check and they did the clicky hip test?  Yup that is the one, that is when any babies with hips out of joint should be diagnosed if it wasn’t picked up at birth.  Trouble is, it isn’t always.

Babies who are diagnosed within the first two months as having Hip Dysplasia (a dislocated or sublaxed hip-joint) are treated by Palvik Harness.  I imagine this to be very distressing for a mother of a newborn, the only comfort I can offer is this type of non surgical treatment offers an 85-95% success rate and doesn’t involve a surgeon’s knife.

My health visitor didn’t know what Hip Dysplasia was, my GP missed it at the six-week check, when BB was admitted for epilepsy at eight months she was given a full physical examination; her DDH was missed.  BB underwent countless appointments because of her seizures, at each one we said we worried about her slow development; she never crawled, she didn’t sit unaided until nearly nine months, she walked at seventeen months.  She was examined physically, including her hips, at every check up.

She had all the classic signs of DDH.

Uneven creases on her buttocks.

A significant leg length difference.

Her left leg did not flex into the classic ‘frog’ position.

Now, with the beauty of hindsight, I can spot a case of DDH a mile away.  So I am sorry expectant parent or parent of a newborn, but in this condition I consider myself to more of an expert than your GP or Health visitor.

I am not alone in this, it is not just my GP, my Pediatrician and my Health visitor; Hip Dysplasia is so unheard of there is almost no education to on it to first time parents.

If you are ‘high risk’ you may be offered an ultra sound, high risk is a first-born female or a breech baby.  My daughter?  She was my third child and was delivered by an emergency c-section.

When I see you and your baby please don’t be alarmed if I flex her legs, check her creases, I am merely trying to prevent the future that my beautiful baby has had to survive. If I try to offer advice on swaddling, carrying your baby in a sling, and positioning them in a car seat, please don’t write me off as overbearing, I just wish someone had been there to educate me.

I so desperately want you to know that some slings and harnesses and moulded seating items can inadvertently place hips in an unhealthy position.  I want to urge you to watch this video to see how to swaddle your baby safely.

I don’t want you to spend your days watching your toddler limping towards you wondering how you could have prevented this.

I know like me, you would do anything for your children, so please for this week help me spread the word about Baby Hip Health Week. 

And for us? We don’t seem to be cured, after surgery last year my daughter still limps, she has not mastered jumping, she runs with a wobble that breaks my heart in two.  She sees her pediatrician at the end of the month to discuss what happens next as physio failed her.

I hate to think I could have prevented this.

Early detection means early treatment.

Love,

The Mum to a DDH child.

Diagnosed Christmas 2011

Pemberton Osteotomy, plus blood transfusion February 2012

Spica Cast for three months

Broken femur April 2012

Cast Free May 2012

Still limping, present day.

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Comments

  1. It’s never something I’ve really thought about and I always wince when the doctors do the newborn checks – I will certainly be taking your advice when bub arrives and make sure he is cheeked thoroughly and I use a good baby carrier!

  2. I would never have known about hip dysplasia I without reading your blog. Very informative postpost. I can’t believe your health professionals didn’t pick up on it sooner. Hopefully sharing your story will help raise awareness to other parents.

  3. Good luck with your campaign x I feel exactly the same way about BRB – eye cancer. Docs and HV missed that too. I’ll help you share awareness x

  4. I’m a ddh mum too who obsesses over other babies hips. My daughter was diagnosed early, treated with pavlik harness which in the summer of 2006 (remember that very hot one!!) was awful. She then had 6 months in a spica cast too until she was 13m.

  5. Scary that the HV didn’t know what it was. My wife is a childrens nurse and often has kids in spica casts on her ward, heartbreaking to see what they have to go through.

  6. My son is 14 and has cerebral palsy, a year ago I noticed a difference in his bum cheek sizes, his right leg was suddenly in a position it never used to be and he would not let me move it, we asked the school physio to check over and over only to be told his leg/hip was fine.
    Then the inevitable happened, his left leg over took the right one in growth and still no-one listened.
    Last week we finally got an ortho appointment in London, Callum has to have his leg broken and hip socket filed out as he has a dislocation and due to it not being picked up the socket is too small to simply pop the ball back.

    The worst thing in this? 54% of children with cerebral palsy who cannot bear weight get this problem, and it is usually before the age of 4 so yes he did well to last an extra 10 years but if it is that common WHY did a physio not pick it up when she sees this all the time?

    Excuse my rant there, was not intentional haha!

  7. As an adult survivor of DDH all of my children have been automatically screened with ultra sound. They’ve all been fine. I’m passionate about educating people about what can happen next, as I suffered 20 years of pain due to uneven leg length after the spica cast.

  8. I completely echo everything you have said. We found out that our daughter has DDH, and was missed by so many, she is now 1 week post op (open reduction Salter on left hip). I find the most frustrating thing about the whole situation in our case, that is was completely avoidable if the proper examinations were performed.

  9. Well done Jane for highlighting this. Our first was breach and had the Xrays. Natty of course had physio (DS) but this is such an important issue.
    H x

  10. I can’t believe that after all those checks they never noticed it. I can’t believe your Health Visitor hadn’t heard of it. I think I must be lucky where I live because at his initial 3 day check my 5th child was marked as ‘unsure’ and within a month had a scan which turned out to be fine, and he’s now nearly 3 with no problems. If only everywhere was as aware….

  11. Hi all, so glad you raised this issue. My story,

    Had the clicky hip test at birth, no concerns raised. From the age of 11 I was very aware that one bum cheek was higher than the other and very aware of a ‘flick’ as my friends described it when I walked as if the affected hip swung back slightly with each step. My mother took me to the hospital where I was xrayed…. But only my spine was xrayed. Was diagnosed with Scoliosis and given physio. This was a total error on the hospitals part as no pelvic exam was carried out. At this time there was no pain so I just accepted that was how I was made. Eventually at age 24 after having 2 babies and pregnant with my third and a lot of weight gain I became severely restricted and in pain on walking. Went back to GP, xrayed again and diagnosed with CHD congenital hip Dysplasia. Was put on huge amounts of NSAIDs and told to bear I needed a total hip replacement but due to my age they wouldn’t do it straight away. After 8 years and practically immobile they agreed to the op. I had this procedure carried out at age 32 and have never looked back. It has been in place now for 16 years and I have never had any pain since. I do know from my Midwifery days that they now scan new babies who have been in a breech position or with Talipes (like club foot). It turned out my mother carried me in an awkward position and at birth my left foot was squashed and I was diagnosed with slight ‘club foot’, this of course disappeared quickly but the legacy of my poor position in the womb of course showed itself years later. I demanded my children be xrayed to put my mind at rest and fortunately they were all fine. This could have been avoided at birth and also at age 11 where I was told had it been diagnosed, they could have put a ‘shelf’ in the hip to avoid further deterioration. I must add that the hip replacement op wasn’t straight forward as there was so little socket left, they had to take bone from the removed femur and graft a new socket to keep the new prosthetic in place. I was on crutches for 2o weeks, non weight bearing for 10 weeks and a long recovery process especially with young children at the time. On annual leave at the mo and relying on wifi but I am happy to answer any questions. Jo x

  12. This a brilliant post – I can’t believe that that some HVs would miss this or not know what Hip Dysplasia was…that’s a bit shocking isn’t it? I love that you would check a baby’s creases just to make sure they are ok :) This is a really excellent post!

  13. She’s a brave girl, as are you x
    Sharing widely!

  14. @helenw71 says:

    My cousin has recently been diagnosed with hip dysplasia at the age of 22. At 23 she’s just undergone the first of 2 rounds of major surgery (POA). It’s put her entire life on hold for 12-18 months – she’s had to give up her job (personal trainer), thus she can’t afford her rent & had to move back in with her Dad. It’s postponed her plans to save to get married and start a family. There is no comparison against seeing a baby/toddler go through what your daughter has gone through, when they’re so helpless and then starting to find their independence, but I can’t help feel her too. Hip dysplasia is clearly life-changing at any age, I think what you’re doing to promote awareness is great.
    Hxx

    • northernmum says:

      Jesus! I thought we were late to be diagnosed, it is amazing how it can be missed – I hope your friend is ok x

  15. Just sending a bit of love your way. I know of two other mums with very similar stories, both children only diagnosed at 2 years old. You sound like you’re both doing a brilliant job and well done for writing about it and helping others.

  16. Thank you for this post. So often we parents have to educate ourselves and rely on out instincts when it comes to our babies.

  17. Samantha McNulty says:

    Hi.
    I applaud everything you are going to raise awareness. Im 31 and was.diagnosed at birth with click hips. They put me in double nappies and then frog leg plasters and whenever my mum raised her concerns that something just wasn’t right still she was fobbed off as being an overly hysterical mother and pretty much told to go away. I was her 4th child and she obviously had experience with babies before but what can you do when medical professionals are just telling you that.its nothing and you’re being stupid. So there I was at 1 year old at the consultants office for my discharge appointment. He had a look at me Nd pretty much panicked. His words to my folks was that he’d never seen a pair of hips more badly dislocated in his life. Basically the hips had never been placed into the sockets in order for them to stabilize. They were screwed. He then operated on me the next day and unfortunately smashed my pelvis. My parents were told Id never walk. Well thankfully my folks didn’t accept this and took me to St James hospital in Leeds where a great old consultant eventually agreed to try and help. He worked for years on my movement and then when I was 6 he did a.long series of operations to create me a set of hips. After a LOT of work by us all I was walking. It was painful and very lumpy but it was walking. Then at 13 i stopped being able to walk as my hips were popping out as I walked. I have been in a wheelchair ever since. I have had a LOT more surgery. The last 2 were when I was 25 & 26 for full replacements. This has helped with the chronic pain but I will for ever more be in a wheelchair and have to use very strong pain medication. Life has been pretty tough, this is an understatement. If you can stop any of this with your little one, DO IT. Be the crazy annoying mum. Do whatever it takes. I am now pregnant with a baby I never thought I would be able to carry and I know I’ll be the annoying mum for my little one. I dont mind though if someone thinks Im a bit of a pitch. It matters too much. Good luck. X

    • northernmum says:

      Thank you so much for taking the time to comment, as someone who has questioned why I am putting my daughter through this your comment has really put it into perspective.

      I am so sorry it has been so hard for you and wish you all the luck in the future with your baby and will pray for healthy hips at birth.

      Jane x

  18. Debbie Marshall says:

    Thank you for this informative post. When my baby was diagnosed (fortunately just after birth) there was a massive lack of information and one of the midwives said that she thought it just meant my baby would spend a couple of years in plaster and we wouldn’t be able to bath her! The Palvik Harness was successful and I am so grateful she was diagnosed at such an early stage. I think your blog is one of the most helpful pieces of information on this topic. I wish your daughter the very best for the future.

    • northernmum says:

      Thanks Debbie,

      There is still a massive lack of information which is why we were ‘missed’, please keep spreading the word and sharing!

      Many thanks

      Jane

  19. Brilliant post. I’d not heard of DDH UNTIL my second daughter (breech at 41 weeks) was scanned at 3 weeks old and it was diagnosed and she was popped in her Pavlik Harness.
    Distressing as those 3 months were, it was a much simpler procedure than what your poor daughter has gone through.
    Moby and other wrap slings help too, my specialist was thrilled to see I carried my daughter in a moby in the frog position as she called it.
    Three months and luckily my daughters DDH had sorted itself out with the use of the harness.
    Early detection is crucial.
    Great post x

    • northernmum says:

      Thanks, a friend of mine has just been diagnosed and her little one put in a pavlik harness, it is so hard!

      I am so pleased though that your ddh journey is over x

  20. Hi, we are just starting our Spica journey.
    Our little grand-daughter was diagnosed on Friday, she’s 16 months and had a wee wobbly walk.
    We’re so angry the DDH has been missed at all the health checks but so pleased we came across your blog while looking for some support and coping strategies, it has helped build a picture for us.
    Thanks for sharing your story,
    (((hugs)))
    Maz.

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