Hip Dysplaysia Support Group

[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

[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

[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.

[Pipsqueak]

Hi there again Jo,
Nappies go on outside or inside of the spica? I'm sooooo confused! I'm guessing they'll tell us all this at the hospital, but from all my years as a mummy, it's all the best stuff you hear from the other mummies! You know, the stuff that really works.
Cheers,
Pip.

[Haileys Mum]

Hi There Pip,

Lucy will have to wear two nappies, a smaller one tucked inside the spica, they cut a hole out over the spot!, then a big one over the top to hold the bottom one in place!! We actually haven't had trouble keeping the spica dry, bu have had to use crawler nappies tucked well up into the back at night as the wee seems to go straight down! They told us to use new born nappies but they're not nearly absorbant enough.

[HKBess]

Hi Pipsqueak

When my dd was in the spica we used sanitary pads. the shape was ideal as it fitted into the hole and then we put a nappy over the top. We did go through a few brands to test sizing and the amount of volume they would hold. As my dd was 3 mnths old, we were dealing with more than wee! The spica did stay relatively clean and dry for the 6 weeks.

Also, the nurses at the hospital (RCH Melb) were fantastic and had lots of good tips on how to cope.

Kids are amazing!

All the best.

[Pipsqueak]

Ahhhh! Now it's all making sense. I can picture that in my mind, thanks!

[KylieCL]

Hello All!!

Gee, its been such a long long time since i have been here, partly because our hip journey seems to be in another life. Although not once have you guys slipped from the back of my mind!

Zali is going top guns now, she crawled at 8 months and now at 11 months old is taking the odd step. Very amazing considering the drama of her early life conserning her hips.

Well we are going back to the specialist at the start of May. Getting that letter confirming her appointment brang back a lot of familiar feelings- uncertainty, fear, hope... i have EVERYTHING crossed for her- i am so scared of her needing furthur treatment! its certaintly not something i want to have to live through again!

Ok well i must get going! I promise i will pop back in here more often!

take care xx

[Haileys Mum]

Hi Pip,

Hailey was in hospital for 2 nights. Like I said the first night was pretty rough. The gave Hailey plenty of stuff for pain and for the muscle spasms they have. The next day we took her for a walk in the pram in the gardens outside our hospital- that night was pretty ok- just panadol for pain. We then went half way home the next day, after they knocked her out again for the mri, stayed the night in a motel and finished the trip the next day. We are 4 hours away from the hospital and this worried me to start with but we have not had any problems at all so it is fine. Since we left on day three Hailey has not had anything for pain. She has not had any pain, back to her normal happy self. You will have to be careful of the small incision Lucy will have on her bikini line but apart from that she won't be uncomfortable. We took Hailey's fav teddies and toys with us to hospital and lots of love and hugs. You will need lots of this too!
The hole they cut out will be lined with some scecial waterproof tape that will help keep the cast dry. Hailey is a hot baby and so we have only put socks and shoes and skirts and tops on her. A few dresses. Lucy's normal sized tee's and long sleved tee's will still fit. Hailey was 9.5kg when she went into the cast and a size 3 skirt or dress fits her well now. Pants are just too hard as you need to get the waist band over her feet which will be FAR apart!!!
Hailey layed in a bean bag at the start but once she got moblie she scoots around the floor on her tummy most of the day now. Sits in her pram for meals or on Dad's knee facing me.
We have tried lots of sleeping things, at present she has a piece of eggshell foam under her shoulders and head and a foam wedge under one leg that we move a couple of times over night to avoid pressure in one spot for too long.
I was really worried about giving her to the anaesthtist. So about half an hour before i was expecting her to go I asked for a warm bunny rug, wrapped her up and got her to sleep. The when I took her to theatre she was asleep and they put the gas mask on her as so she just stayed asleep. It was not nearly as bad as I expected. Hailey was pretty sleepy for a fair while after the surgery.
I hope this has covered most of your questions!

[Pipsqueak]

Dear Jo,
Thanks for your info and answers to my many questions. I'm comforted by what I've read from everyone here, thanks! I'm a lot less anxious about it now, well as un-anxious as I think I'm going to get really! We've got what we can organised already and the two grandmas are ready to go with minding the other 3 cherubs on Monday and Tuesday. Have spoken to the hospital this afternoon and Lucy is scheduled third for surgery, so may not be in overnight, just wait and see at this stage. I think I'd prefer to be in there overnight for them to be able to give any pain meds which may be needed.
We bought her a hot pink bean bag and triangle pillow yesterday, and a few friends of my mum-in-law have offered their sewing prowess should we need fitted covers for any of her extra pillows and equipment.
So almost ready to go! Just have our nine yr old's sleep over party to hold now, which I'm glad I have that to keep my mind a little occupied over the weekend.
Cheers everyone and I'll keep you posted about how it all went.
Cheers,
Pip.

[Beatrix]

hi everyone,

Now i dont know if my DD has this problem yet but we have just had her two week check and she has a clunky left hip. 2 out of the 4 rotations with her lig made it click.
I have also noticed that sometimes i am sure i have heard a joint click but i am not sure which joint it was.

So now we are off to the GP and we go from there.

[Haileys Mum]

Hi Pip,

I hope your daughters surgery went well yesterday. Let us know-when you get time!!-how it all went


Hi Beatrix,

From what i understand the earlier they get onto the problem the quicker and usually easier they can fix it. Good luck with the GP.

[Pipsqueak]

Hi all,
Lucy had her hip surgery on Monday, and it went well. The operation itself took less time than expected as the hip slipped back into position much easier than anticipated and the hip ball has a nice secure fit in the socket, which is very good news. Lucy has a bright pink plaster and fibreglass cast from her chest to her ankles, and a small wound in her groin from the surgery, which didn't need stitches. After she woke in recovery, she was very distressed and took a long time to settle. We were expecting this but it was still awful to try and comfort her, as nothing really worked very well. She was totally disoriented and uncomfortable and in a bit of pain no doubt too. She did calm down after a few feeds, loads of cuddles and some more pain relief. Thankfully, both DH and I were able to meet her in recovery, as we could see this was definitely going to be a 'tag team' parenting situation, with both of us taking it in turns to hold her and rock her as best we could. Lucy eventually fell asleep and slept through her MRI, where we went after recovery. Lucy's doctors were able to reassure us that it had all gone well, as the MRI showed a very good fit between hip ball and socket. We also arranged to stay overnight up at the hospital, as I was concerned about pain and discomfort during the night, especially being an hour from the hospital in case something happened.
Monday afternoon Lucy was sleepy but she did get her smile back late in the day, amazingly! She did give us both really serious 'death stares', as if she was saying 'what have you let them do to me', and she'd look from one of us to the other, as if to say 'make her/him stop this!'. We spent the afternoon trying to juggle her as best we could, talking to the physio and occupational therapists, and learning how to do the whole nappy thing with a plaster cast in the way! So far only one leak to report! The first night in hospital she went well considering what she'd been through. She was a little more restless, and was quite frustrated when she woke and realised that the cast was still there. She tried to crawl out of it, and even grabbed the bars of the hospital cot and tried to pull herself out of it. Poor little thing, it's upsetting to see her frustrated and not be able to explain it to her, like you would an older child. It will just take her 'getting used to it' everyday until she stops noticing it as different and adopts it as normal, which to me sounds so un-normal. She growled at me in the early morning when she realised I wasn't going to, or couldn't take it off her, and then called out for Daddy. Of course he was at home, so she was crying and I had a tear in my eye and a lump in my throat while trying to comfort her. Thankfully she fed really well, albeit really awkwardly, all night. She was no doubt catching up on the feeds she'd missed out on!
We came home yesterday (Tuesday) around lunchtime and slept the whole afternoon. Last night was better still in terms of sleep, I think it'll be a case of trying lots of sleeping positions til we get one that works well for us all.
So for the moment we are tired but the immediate anxiety about the surgery has passed. We are just now learning to adapt! Last night Lucy actually crawled across the bed, dragging her stiff legs behind her! I didn't think she would be able to crawl in it, especially when I saw how awkward and heavy the cast was. I was very surprised when she did that last night! Thanks to you all for your kind thoughts and messages and prayers for Lucy and our family. Warm wishes,
Pip.