Hip Dysplaysia Support Group

[MistyFying]

Finding out your baby may have Hip Dysplasia can be a stressful time for parents. The thought of putting your baby in a harness can be very upsetting. Please share your experiences past or present and help support others going through this tough time.

Developmental Hip Dysplasia affects approximately 1 in 600 girls and 1 in 3000 boys in Australia. It is a condition where the hip joint is dislocated or prone to dislocation, due to either the socket being too shallow or the ligaments being too slack allowing the ball of the joint to fall out of place. The left hip is 3 times more likely to be affected than the right, and bilateral hip dysplasia is not uncommon. There are a number of known causes of hip dysplasia including family history (1/3 of cases have a family history), congenital disorders (eg spina bifida or cerebral palsy), breech delivery or a multiple birth.

Signs that a baby may have Hip Dysplasia can be reduced joint mobility, a low clunking sound when the leg is rotated or an unusually large perineum. If only one hip is affected, some other signs can be that the skin creases of the buttocks don't match or one knee may look higher than the other. Sometimes diagnosis doesn't come until later (about 2 or 3 years old), and this is indicated by an unusual waddling gait, a limp, uneven hips or walking on tiptoes.

Approximately 95% of babies born with hip dysplasia can be successfully treated. Treatment for a newborn involves a Pavlik harness which holds the joint in place while the baby's skeleton grows and matures. Subsequent x-rays will track the hip joint's progress. The Pavlik harness is effective in over 85 per cent of cases. Most babies will require the harness for between six and 12 weeks and do not appear to be distressed by its use. Babies diagnosed over 6 months old may require a general anaesthetic to manipulate the hip back into position, and an operation may be required.

Most babies with successfully treated hip dysplasia have no further hip problems later in life, although they may be susceptible to arthritis.


Sourced from The Victorian Government Better Health Channel Website

The previous thread is here.

[Haileys Mum]

Hi Guys,

Just back from Melbourne. Hailey's hips are no better after 2 weeks in the Pavlik harness and 2 weeks in the DBB so we are going back soon, 2-3 weeks, for surgery and a hip spica. I am totally devastated, numb, angry, sick, and god knows what else. I don't really know what else to say. Just thought I'd let you know.

[bridee]

Jo - so sorry things have not improved. There are people on here that know about hip spica so I'm sure they will be able to give you support.

[ZigZag]

Hey there HaileysMum - great name

Sorry to hear little Hailey's hips are no better. My DD had the hip spica too. Just wanted to let you know, our experience, though devastating to initially deal with, was a good one. Quick run-down of our story. Diagnosed at 6mths, into spica cast at 7mths, out of spica at 10mths and straight into brace until 18mths, worn all day everyday including sleep (max. 1hr free). She went in for surgery but they were able to manipulate her hip into the correct position whilst under so luckily no open surgery was required, but was still put into spica. She's about to have her final check-up in a couple of months and all is looking pretty good (she's just about to turn 3).

Hailey had the spica put on at the beginning of summer so I immediately thought we'd have a particularly tough time on our hands but she was amazing with it. Although not exactly something you want your child to have to go through, babies are amazing at what they can cope with. We did have a couple of problems with sleeping but had other factors contributing to it. Hope you have lots of people around to love and support you through this time. You will get through it and be all the more stronger for it as will your daughter.

Don't hesitate to ask any questions. I know others on here have gone through the same thing.

lots of for you and your family during this difficult stage.

[LauraK]

Jo

So sorry to hear that things havn't inproved, can't even imagine how you must be feeling. I was in a spica cast when I was 13 months old and I can't remember a thing and my family tell me that I adjusted really well - it was them who struggled to see me in the cast. I know it's no help at the minute but my hips are absolutely fine now and this keeps me going when I worry and get down about Harrisons hips.

Keep us updated on how things go and take care of yourself.

Laura x

[Haileys Mum]

It seems to get worse for us at every turn. Monday Morning the Paed Ortho's secretary rings and says Hailey needs surgery asap, as in this saturday, so of course we freak out! But we get over that and start to get prepared, then at 5 pm today the hospital ring up and say they have been onto our insurance co. who won't pay as they classify this as a preexisting illness and we have only has health insurance since june last year.... So regardless of the fact this was only diagnosed 5 weeks ago, and we have had the insurance for 8 months, they are saying it's pre exisitng and won't pay. Now we have to get all these forms filled out so they can do "Further assessments" and in the mean time pay private rates in a private hospital and also pay the surgeon and anaesthetist. Fingers crossed fo a tatts win!!!!

God i can't wait to say something positive to you!! I feel like an angry whinger.

Thanks Laura, It is nice to know that Hailey will be ok eventually, just seems so far away at the moment.

Hi Amy girl, The ortho surg is hopefull he won't have to open up Haileys right hip, but certain he will have to open the left one. I hope our Hailey copes as well as your Hailey,

Thank you all for your support.

[purple fairy]

Hey there HaileysMum - great name

Sorry to hear little Hailey's hips are no better. My DD had the hip spica too. Just wanted to let you know, our experience, though devastating to initially deal with, was a good one. Quick run-down of our story. Diagnosed at 6mths, into spica cast at 7mths, out of spica at 10mths and straight into brace until 18mths, worn all day everyday including sleep (max. 1hr free). She went in for surgery but they were able to manipulate her hip into the correct position whilst under so luckily no open surgery was required, but was still put into spica. She's about to have her final check-up in a couple of months and all is looking pretty good (she's just about to turn 3).

Hailey had the spica put on at the beginning of summer so I immediately thought we'd have a particularly tough time on our hands but she was amazing with it. Although not exactly something you want your child to have to go through, babies are amazing at what they can cope with. We did have a couple of problems with sleeping but had other factors contributing to it. Hope you have lots of people around to love and support you through this time. You will get through it and be all the more stronger for it as will your daughter.

Don't hesitate to ask any questions. I know others on here have gone through the same thing.

lots of for you and your family during this difficult stage.

my one year has been in her spica now for 3 and half weeks and wont sleep at night. do you have any ideas for help

[wysiwyg]

Hi hope this is the right spot for this. Had an ultrasound on my six week old DD yesterday and it confirmed she has got an issue with both her hips although left worse than right (I read at the beginning of this thread is more common with left - I wonder why?) - and will need to wear a harness (Pavlik harness?). I now need to wait for the doctor to get the results who will write me a referral - just wondering what the process is from here. Will I have to wait long to see someone, who do they refer you to?, how long will it be before she is the harness am hoping is quick as seems the quicker the better?, do you need special clothes to wear with the harness? can you carry in a sling in the harness? can you use cloth nappies? how much is it likely to cost?

Is great to read about other babies who are doing well.

[cjoe]

Hi All,

Sorry I havent been back on line for a while, Ella is finding the cast very difficult to adjust to. We have had some really bad days lately.

The operation went well, she had a Salter Osteotemy instead which means that we will have to go back in about 4 months to have the wires removed, but they have said that in the end this will give a better result. The operation lasted longer than expected, which was a worry.

Ella wants to be held all the time too, we are managing more down time each day and fortunately she fits into her high chair, so my hubby had made a play table that fits around her.

We have had many sleepless nights and I spend most nights on a camp bed next to her cot, we had to see our doctor for some night time sedation as I was not coping at all on 1 - 3 hrs sleep a night, Ella was waking continuously, we have now had a couple of good nights - only waking a couple of times so hopefully we will all feel better soon.

Ella is very frustrated during the day but with sleep we can cope with that, her 3 year old sister is managing to play with her - lots of threading games and sticking and pasting.

I have found that Ella will sit on the bean bag for short periods of time, we put the bean bag down with the pointy end forwards, (on its side) most of the beans to the large end and she manages to straddle the narrow end with her head supported by the large end - hope that makes sence.

I admire everyone who has to go through weeks and months of this, we are just trying to count down the days until the cast comes off.

Hope you are all managing much better than we are, I'm sure that with better night sleeps we will manage.

Take care,
Caroline

[Pipsqueak]

Hi there all,
I'm new to this! We have just been given a diagnosis of DDH with our baby girl Lucy, 8months, and have scheduled surgery for 7.4.08...really soon! Kind of in a head spin and freaking out somewhat. Lucy has right hip dislocation, needs an open reduction (???I'm probably using all the wrong words, sorry!) arthrogram, aductor snip and cast. It has all just hit us really, and we're launching into this new world of surgery and treatment. Any words of wisdom and encouragement gratefully accepted! Practical tips on living and coping with the casts and braces, especially that nappy situation!
Cheers everyone,

[minimatron]

Hi Pipsqueak, sorry am not too sure about surgery for ddh but I am sure you will get many answers here. Good luck. It is a total headspin when you find out that your dd has a problem with their hips. Its hard work at first but the results are usually pretty good.

my dd olivia was in a pavlik harness for 6.5 months. She is now almost 1 (April 1st) and is walking around using her trolley, sometimes standing by herself and climbing. You wouldnt believe that she had any issues with her hips.

Sorry I am not much help, but please feel free to vent in here, coz I sure have, especially at the beginning when things are hard. You'll find great support in here.

Where abouts are you?

And Laura, good luck with Harrisonas appointment in 2 weeks,

Love Melissa

[Pipsqueak]

Hi all,
We're near Gosford on the Central Coast NSW. Lucy's treatment will happen up in John Hunter in Newcastle, only about an hour from us, so not too much travelling to do.
Pipsqueak.

[Pipsqueak]

Hi again,
I have been reading some past posts and was wondering if Karen (Bubbagirl I think??), was still here as I'd love to hear her advice on keeping the cast dry...I think it was her who said she'd found a way that worked really well and only had had a few wet patches!
Cheers everypne,
Pip.

[Haileys Mum]

Hi Pipsqueak,

Using the crawler nappies with Haileys plaster works perfectly.
We've not had any wet patches or any problems.

[nicoli]

Hi all

Laura - it is great to hear Harrison is doing so well. Scarlett is in much the same situation having her brace on at night only and she has been an angel about it. She still wakes once a nights so I hope that once we are totally brace free she might sleep through too! She has had it on since she was 3 months old (now 8 months) so it would be nice. Scarlett still isn't rolling over though. I don't know if she wants to anymore. She sits up really well by herself and reaches for things from there so I guess there is not much incentive to roll over. She is also not crawling yet. I don't know if she ever will because she seems to like standing up (with help) but gets frustrated if left on her tummy for too long. I guess I don't want to rush her anyway!

Pipsqueak - as Melissa said this is the place where you will find the answers to your questions. I have found this forum the most invaluable resource especially at the beginning when I thought our world was falling apart. My daughter Scarlett was in a pavlik harness from 3 months and then a dennis brown brace from 5 months. She is now 8 months and allowed out of it during the day. You will see from reading everyone's responses that things will get better and you will learn to adapt your life to Lucy's requirements. Good luck for the surgery and I'm sure you'll let us all know how she goes.

Nicole

[Haileys Mum]

Hi Pipsqueak,

My daughter Hailey was diagnosed with DDH at 8 months also-except both her hips were dislocated. She is now ten months old. She wore a Pavlick harness for two weeks, a Dennis brown bar for three weeks and then 4 week ago she had Surgery. She had an open reduction which included the arthrogram, a z incision in a tendon, cutting two muscles and opening the hip capsule itself. She is now week 4 in a hip spica. For us, now in hindsight, the worst part was the week we had to wait for surgery. The first night was rough. the second night was much better and the third night we spent in a motel on the way home. We are a long way from Melbourne. Hailey has coped with the plaster really really well so far. It has been really hot here so she hasn't worn much in the way of clothes! She now wears size 3 skirts over her plaster and tee's or skivvys over the top of that. Socks and sometimes shoes. At night she sleeps in either nothing!, or a bonds wondersuit in a size 1 or 2. The bonds stretchies are also really good in a size 1 or 2. The hospital fitted her into our safe n sound meridian car seat, and our 3 wheel jogger pram is really good for to sit in during the day. She spends most of her day on her tummy now as she spends all night on her back. She has become SO strong in the upper part of her body, she can actually lift the plaster and move around. She gets around backwards really really well. Keeping the cast dry is a challenge. We were told to use new born nappies and then a junior nappy over the top to hold the newborn in place. The n/b nappies are not nearly good enought to hold the urine output of a 9 month old so we now use the same size nappy she was in prior to plaster and tuck it a long way into the plaster! Nappies have to be changed pretty much every 2 hours or more during the day and once or twice o/n. Hailey was a really great sleeper before plaster, she now wakes a bit at night but she is a completely happy "normal" 10 month old baby-she just weighs alot!!!
Waiting until the 7/4/08 will be really hard for you guys. I really feel for you and send big hugs and good wishes to you. Once you get out of hospital you will be amazed at how quickly you and Lucy adjust to it.
Hailey is in plaster for another 2 weeks then we go back it to come off. She will probably go into a rhino cast after that, if not morer plaster, but I don't know much about this.
I hope this has helped you a bit. Please ask me any questions you like, no matter how silly you think they are- I've probably asked someone the same question!!!

Warm regards,

[Pipsqueak]

Hi everyone,
Thanks so much for those great responses to my questions ladies! It does feel a lot better knowing that I'm not 'alone' with this issue. I think the fact that it has all happened really quickly has taken us a bit by surprise, we are really still in shock about the whole thing and what it means for our family. We met with loads of specialists and physiotherapists and occupational therapists, and heard a wealth of info on the condition. Of course, you don't really know all the questions you want to ask until you've had a little while to sit and digest all the info you've just heard. Unfortunately, we don't live really close to the hospital where Lucy's treatment will take place (are we permitted to put the name of hospitals? just keen to find some people I can meet up with perhaps?), so can't just drop in with a bundle of questions...which is what I feel like doing fairly frequently! It is only about an hour up the freeway though, so it's totally managable without much extra planning at all. We have a lot of family support and support from great friends too, which means a heap I'm coming to fully realise.
I think at this stage, I'm scared for Lucy having the operation. I almost lost it when I had to sign the permission form for surgery. I fully understand the risks of *not* having the surgery, and that there is no other way at this point. I was amazed that this didn't show up at birth, or really any other previous checks, but have since read, and heard from our specialist Physio, that in some cases it just happens that way. But then that makes me scared that my 3 other children could also have it, and it has not shown up in them. They are all healthy and walk and run without complications blah blah, but the worry wort within me is now panicking about it! Of course we are now watching Lucy like hawkes, and she has just begun to crawl in last two weeks, which I think has made little things more noticable, like the fact her right leg is shorter than her left, and her thigh's don't seem to be symmetrical. But 3 weeks ago, those things weren't noticable at all.
I'm worried about how it will happen on the day, as we only got a general run down of all that will happen as they have had to shift around other surgeries for us. We met the people who will be handling treatments and surgeries, and I am really comfortable with their level of care, I was reassured to know that this is what they do, and sometimes specifically *only* what they do, day in day out. We have been asked to be prepared to stay over one night in hospital, as Lucy's surgery won't be first up, so chance of styaing overnight are pretty high. In your experience, do they normally stay in overnight? Not that I'm busting to get home! Before and after her surgery, there is so much to find out at the hospital, car seats, care of the cast, physio treatment etc...my brain isn't big enough!
The whole nappy situation is playing on my mind, so I'm so thankful to you for those valuable suggestions. They have lowered my stress level somewhat! I have a few friends who are keen sewers and knitters who have offered help to fit the cast with some softer homemade liners and protective edges. Did you all find that during winter, you needed to put some loose pants or leggings over the cast, or just bub's feet? Lucy's grandma has already knitted her some gorgeous cardigans and my knitter friend has offered to knit some matching pants with loose fit to go over the cast if I would like her to, as well as some socks.
You're right Hailey'smum when you say that the wait for surgery is nerve wracking. How did you help with Hailey's post surgery pain, and how long was it really sore for do you think? What were some of the really helpful bits and pieces for helping her to stay comfortable in hospital and at home. I'm so glad you mentioned your pram and about the car seat Hailey'smum, as that was one of my questions also, what happens with these things. A friend has suggested supports made from cut foam wedges, and I thought of a little bean bag, what have others found to be great things.
I'm sorry that this is such an essay, but as I've said my head is spinning and it was a huge comfort to hear you stories and answers to my questions...and so quickly too!!
Huge thanks to all,
Pipsqueak

[Alexandra's Mum]

Hello All, I have been reading your stories on your little ones DDH in the past few months and was sad to hear about everyone' difficulties, it has been heartbreaking.
My little girl was diagnosed with a clicky hip at a few days old and we had our fist ultrasound at 6 weeks old with another 2 follow up ultrasounds. After the second ultra sound the pediatrician said she was very happy with the progress but we will do another ultrasound in 6 weeks to be 100% sure.
After this ultrasound we were told she would have to go into a brace, which she did quite quickly. At 5 months old she was in the DB bar. She wore this for almost 7 weeks. On Tuesday we went back to RCH for first check up, were told to continue on and we would receive a phone call to advise if we can have the brace off for bath time which up until know we could only sponge bath. We received a call the next afternoon and were advised that the brace was not working for her and she will need surgery and to take the brace off until then. We will be seeing a surgeon in the next few weeks to further discuss and do another x-ray etc.. I am not sure were we go from here, even though they have explained it to us (on the phone) i feel like i am in the dark and in has been sprung on us quite suddenly. I am in shock and very upset.
Am hoping someone can shed some light. Going by some of the stories i have read it seems that this is going to be a very long process for our baby, and I feel like she is being deprived of a normal childhood.
I know i should not feel this way as this is not the end of the world and she will be fine in the long run. We seem to have been dealing with this issue from the day she was born almost and it has only been getting worse for her until now. I am not looking forward to her being uncomfortable and in pain after the surgery.
I am so sorry to babble on like this.