Hip Dysplaysia Support Group

[LauraK]

Hi everyone.

Just a quick update on Harrison now that he is brace free during the day. Within a few days of having the brace off he managed to roll onto his front and although he hasn't done it again at least we know he can actually do it! Things are so much easier without the brace and it doesn't seem to bother him too much having the brace on at bed time. He has never slepped through the night so I really hope that if he does get the brace off at night then we can aim towards him sleeping all the way through! At the minute he sometimes wakes when he is trying to move his legs and he gets quite upset so we end up feeding him to try and settle him and get him back off to sleep. We are back to the hospital in 2 weeks to have an x ray and hopefully we should have some good news - we'll just have to wait and see. I'll let you all know how we get on. Hope everyone else is all ok.

Love Laura.

[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.

[Isabella's mum]

I am new to this forum and would like some help. Isabella is almost 6 months old and has previously been in a DB brace for 10 weeks, this didn't work so she has just had a closed reduction and is in a Hip Spica for 8 weeks. Really tough time for us but she is wonderful and her happy self again after only 3 days. Really would love some suggestions and help about suitable prams. We have a Phil & Teds Vibe but can't seem to fit her in or work out how to. Can anyone suggest a pram that will fit her in a Hip Spica. I realise every baby will be different but would love to hear how everyone else worked out the pram situation.

[nicoli]

Hi Isabella's mum. I hope you are coping as well as Isabella is - it is much harder on us parents! My daughter Scarlett hasn't been in a spica (yet) but we had trouble fitting her in the pram and car seat in her pavlik harness. We ended up folding up towels and putting them under her bum so she was lifted up out of the pram. She was effectively sittining on top of the pram instead of in it! As long as you can reach the straps of the safety harness arounf it it should be OK. I'm sure others on here will be ab;e to give you some better advice about this.

So when was Isabella diagnosed? Just after 3 months? That is the age my daughter was diagnosed and she went into a pavlik harness before going into a DB brace. Both have done the job of forming her hip socket (she never had dislocation), but our doc is still concerend that the angle that her hip sits in the socket is not right. 3 more months until we see him again so we don't know what is happening until then, but we've been told she will probably need surgery before she goes to school.

Nicole

[Tammo]

Hi Nicole,

Thanks for your response. Just had a look at your pics of Scarletts harness and brace. It looks like she coped really well, and might I add she is just the cutest thing ever!!! I have been onto some other sites also and had a look some pics. Looks like there are so many different ones!!! I guess we will wait until we have our next appointment in Syd on 11 Dec and I will ask then.

We still have not heard anything on the scan results. I think the doc here is waiting to talk to Dr Bellemore in Syd maybe, as we tried to call him and he was overseas at a conference. Still crossing my fingers!!!! Will let all you guys know when we know.

Hi Isabellas mum,

I too have a little girl in a spica. What a nightmare!!! We have a Valco three wheeler pram and we found that the easiest thing to do was to semi lay it down with a pillow underneath her and a roll under her ankles, so like Nicole said, she is basically sitting on top of it. This seems to be the most comfortable for her. And because of the weight of the plaster, she does not move all that much. Hope you are coping ok, as I know I am still adjusting emotionally, and this is Elenis third one!!!!

[cannedemma]

Hi,

I am new here and have been reading through a few of the posts and it is good to see there is some support.

I have a beautiful 6 month old daughter Charlotte. She was born with a foot deformity (which is fine now) so was automatically booked for a hip ultrasound at 6 weeks, the hip U/S was abnormal but being so young they wanted to give her time to see if she would heal by herself. We went for another U/S about 6 weeks later and it showed improvement so they did not treat her. Then we were booked for an x-ray which we went to just this monday and they say that she has DDH and both her sockets are shallow and she has to go into a DB brace for at least 3 months. As you can imagine both my husband and i were really shocked because she seemed fine was just on the verge of crawling and movement were all good...

Anyway, she seems to be ok with the brace but is not sleeping well, is waking several times at night when previously she sleeps 12 hours... I dont know how to make her more comfortable at night??

Also i am really concerned about her development now, she was doing so well was rolling all over the place and was just starting to hold herself up into a crawling position... now i feel like she is not going to be able to do anything and when i give her time on her tummy with the brace she gets really frustrated because she can't move much now. I guess i was wondering if anyone else's babies have managed to be mobile at all in the brace?

Also i am worried about the next appointment, they said 3 months but reading on here it seems that not many babies are better after 3 months and end up taking alot longer, i am so upset about this, it is horrible to see her so frustrated and she is soooo tired because she is not sleeping properly.

This is still all very new to me and i am still struggling with the basics like nappy changes and clothing, (most of her clothes dont fit over the brace)...

Anyway i know nobody can tell me how long it will be and reading on here she is definitely not the worst affected baby so i guess i can count myself lucky on that but i guess that makes no difference really, still a bit fresh for me so still finding it really upsetting...

Emma.

[sweetpea678]

Hi Emma,

I thought I would give you my expereince with the db brace. My second dd was not diagnosed with double hip dysplasia till she was 6 months old, I had to travel to Sydnet to get it checked properly as no one in Canberra would deal with her, (no private cover). At the time she was put in it she was rolling and doing the rock thing that babies tend to do before they crawl. She was checked after 4weeks to make sure it was in the right size for her and all. Then checked again at the 3 month stage her dr said it was looking promising and to come back in a month, I could not get an appoinment for 6 weeks, when I did it was all better and the brace game off then and there. She is now a happy 5yr old.

In terms of movement by the time she came out of it she was rolling in it, sitting up and even tried to stand. Within a month of being out of it she was crawling and cruising furniture. On the sleep front i used to put rolled nappies under her legs to help support the weight of the harnes this helped her sleep, though i still had to get up to her every 3 hours to move her a bit eg tilt to side slightly etc.

Hope this helps.

[cannedemma]

thanks for that message... it is good to know that it is not always ongoing for months and months, i am still vey raw about the whole thing and support is great...

i will try the rolled up nappy to help her sleep and hopefully she will be more comfy...

thats great that it didnt impede her development too much and she was up and about so fast, i hope charlotte can achieve the same...

thanks again...