Hip Dysplaysia Support Group

[Tammo]

Hey guys,

Thanks for the replies. No news yet on the CT scan. Doc was in surgery today so will not find out until tomorrow It is like an emotional roller coaster isn't it.

Just went shopping and purchased a Jolly Jumper for Eleni. I am not going to have it so her feet touch the ground but I think it will be good for her, even if I use it just to feed her in. What do you think??? We did get her a bean bag as suggested, but I find it is not all that comfortable for her. I just want to try to get her in different positions rather than her back. She fits perfectly on my hip, but because of the plaster she gets heavy real quick and I have the bruises to show it!! Ha ha ha.

I am guessing that the pavlik harness gives the little ones a little more freedom? And definately would not be so hot? I am counting down the days until we get into that. One day at a time though.

Nicole, I read that your little Scarlett is walking!!! How exciting!!! You must have been so stoked. How long was she in the harness for all up? And what is the dennis brown brace?

I guess I have to keep remembering that she is going to get better. And like you guys said, look at the big picture. Like my husband says, in a life span of maybe 100 years (we like to think so anyway!), what is 12 months? And she will never remember this - we are the ones who will!!!! Ha ha ha. I find it really tuff sometimes though.

I feel better talking to you guys. And mis_tree I am so glad that we are in the best of hands with Dr Bellemore. He rocks!!!

Hope all is well with your little bundles of joy - and I will let you know the results of our scan.

Take care, and thanks heaps.

[bridee]

Tammo - hope you have found out some news from CT scan. Just reading your other post, you mentioned you can't wait until she gets into the Pavlik Harness, I'm no expert (DD was only ever in a Pavlik Harness) but not sure if a Pavlik Harness is used after a spica could be a different brace. Pavlik Harness is generally only used on younger babies. DD was 5 mths when she came out of it and they were even talking at that age if she needed to stay in it any longer she may have needed a different brace.

If you goggle hip kids you will find websites that have photos of the different braces used.

[nicoli]

Hi Tammo - Scarlett was only in the pavlik harness for about 2 months as she went into it quite late (after 3 months old). Our first orthopeadic surgeoun put her in the pavlik but when we went to Westmead Children's hospital they told us the pavlik was too small for her and that is when she went into the dennis brown brace. I can't post links on here but if you go to the link in my signature and then click on the 'froggy' and 'air jordan' links you can see what Scarlett's harness and brace look like. I hope you get some news about Eleni's scan soon.

Scarlett only has 3 months left in the brace at night and I'm counting the days. She really doesn't like wearing it at night as she likes to sleep on her side. Most nights I hear a thud as she rolls over and hits her leg on the side of the cot. Then she sleeps with one leg up in the air. I thought at first it must be uncomfortable but I guess she wouldn't sleep if it was!

I am also a bit worried about Scarlett's walking. She walks on her toes alot and really 'toddles'. I guess most babies still getting the hang of walking do this, but I'm still a bit worried.

Hope everyone is doing well.

Nicole

[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...

[Damsbabe]

Hi everyone,
I just found this great forum as I am keen to learn all i can about hip dysplasia. My 18mth old daughter Sienna was diagonosed just after 12 mths with a dislocated hip. We have been waiting every since for her operation. Today it was confirmed for Dec 8th. She is having the dye put in and her hip put back in the socket then plaster for 3mths. I have read heaps about nappies - thanks for your suggestions and comments. I was however wondering how you bath/shower them???? I am assumming with plastic around them in the shower. Can anyone offer any advice. I am dreading her plaster through the summer as I have been told it smells and there is not much you can do with them with the warm weather. I am also worried she will get frustrated as she currently walks (runs) everywhere and loves her swimming - which she will miss for a while. We have bought her an Elmo beanbag - as she loves Elmo, so that will be a nice surprise for her when she comes home from hospital. I have also been looking at high chair(harness type things) options - any suggestions would be most welcome.
I am also 6.5mths pregnant and am dreading the weight issue with the plaster. Believe it or not I found out I was pregnant the week we found out about Sienna's hip. At the time I thought it would all be over by the 2nd bub, but with RCH(Melb) waiting lists it looks like she will still be in plaster or brace when 2nd bub arrives. Thankfully I have a great husband who does alot and just adores our little girl.
I look forward to reading and sharing with you all. This forum will be a great comfort for me.
Take care all
Paula

[MonicaP]

Hi Everyone,
My name is Monica and about 3 weeks ago our 4 month old baby daughter was diagnosed with Hip Dysplasia in her right hip. She was placed in a hip spica on Tuesday and we were told she would be in that for a min of 3 months, then a brace full time (except for baths) for 4 weeks and then the brace only at night for another 4 weeks.
I have been reading some of the previous posts and it seems that in most cases the spicas and braces are on for a lot longer then that.
My husband is handling it quite well but I am having a really hard time dealing with it. Please tell me it gets easier! It came as such a shock because when it was first detected by our clinic nurse she said it might just need a bit of physio, then after the initial x-ray our GP said she will probably have to wear a brace for a few months, and then when we saw the surgeon it went froma brace to a cast so it just seemed to get worse and worse. Thankfully she didn't need surgery as he was able to place it back manually. She lost a bit of her spark for the first few days but thankfully is starting to become her old self, however she has gone from being an excellent sleeper to becoming very distressed when we put her down at night and waking up almost every hour throughout the night. Did anyone else experience this during the night and any tips on what to do. Strangely enough her day sleeps have not been affected.
Also I am really worried about her getting sores from not moving around. Prior to having the spica put on she was rolling onto her tummy and lifting her head really well but since seems to have digressed. When I put her on her tummy she cries and hardly even attempts to lift her head. Any suggestions?
We were told by the cast technician to use a sanitary pad as well as the nappy to soak up as much urine as possible but twice now it has gone down the back of the spica. Does anyone have any other ideas on how to prevent this from happening?
We have our follow up appointment on 9th of Dec to make sure everything is going ok and I can't wait until the six week change because at least we are half way there. 3 months feels like an eternity at the moment.
I hope this makes sense as my head has been swimmimg for the last few weeks and I'm hoping for some sense of normality to return soon.
Thanks for any help and/or advice it will all be appreciated!
Monica

[Haileys Mum]

Hi All,

It has been sometime since I've written on this forum and I have been reading all your posts. It makes me sad remembering how our journey was but we are now at the otherside, and everyting is fine with Hailey; almost like a distant memory.
Hailey was not diagnosed until she was 8 months old, I knew something was wrong but no body would take it seriously. She went into a pavlik harness for 2 weeks- causing femoral nerve palsy as she was too old/big for the harness, then into a dennis broiwn bar for two weeks, then she had a closed reduction on her right hip and an open reduction on her left hip. A spica for 8 weeks, a rhino cast 24/7 for 6 weeks, the her L leg wasn't movong so well so rhino cast at night only for 6 weeks, the another review and the surgeon said leave it off. VERY long story short!! After this she quickly started moving "normally" she walked on the inside of her ankle to start with but now walks and runs pretty normally. She is 18 months old.
I will tell you some of the things that i found helped with having plaster on; also over summer.
Hailey wore size 3 or 4 dresses that fitted over the top of the plaster to hide it a bit. The outside of the plaster got filthy but it was ok. The other things that were good were the bonds coveralls, in a large size.
We used huggies newborn nappies and the Aldi newborns (which I found MUCH better), i used scissors and cut all the exta banding off the top at the back, tucked into the plaster and plenty tucked into the back. we actually found it easier to clean while she was laying on her back and then turn her over and tuck the nappy in the back. This also ment that we could make sure the nappy was flat and far enough up to stop the plaster getting wet. We then turned her over onto her back again and put a huggies walker over the top of the whole cast. I only neede to change this nappy once, sometimes twice a day as it never got wet. We had two leaks early on but it was ok after that.
We were not allowed to bath or shower her. We then wrapped the plaster in a towel and tipped her upside down a bit to was her hair and as much skin as we could reach!!
Not sure if the still sell them but a "dinky Diner" on ebay was the best way to secure Hailey to a chair and feed her.
Activity wise we tried to alternate her position as often as possible, sitting up, laying back, flat on her back or front. Lots of reading, bean bags were great.
She fitted over the 3 wheeled stroller, just careful of her ankles, people tend to walk way to close to prams.
Sleeping: the first week or so was ordinary. We then put eggshell foam over the whole cot matress and an extra layer up the top so her back layed on this and made it a bit higher than the plaster hence supporting it, (Does that make sense??) This actually seemed to help a bit. She then settled back into being a good sleeper.We also had a wedge that we put under one leg at bed time, then changed it when we went to bed then would take it out ealy hours of the morning. Just to distribute weight a bit over the night.
On her tummy i would put a bit of something, folded up hand towel, to lift her up, being mindful not to put pressure on her ankles as we found when she tried to lift her head it put a fair bit of pressure on her back on the cast.

I hope this gives you some tips.

[cannedemma]

hi monica,
i only found out last week about my daughters hip dysplasia and i can totally understand where you are coming from,she definitely lost her spark and only seems to be becoming her usual self now...

luckily (i guess) she is only in a brace and didnt need a spica so i can't help with the dirty issues with that but with the sleep she didnt sleep well at all for the first few nights so 3 nights ago i tried folding a quilt into 4 and putting it under her and she is now back to sleeping through the night, if the cast weighs a bit it might be worth propping a pillow or rolled up towel under her legs to support it... i am sure sleeping on a quilt is totally against sids but she is quite comfortable with it and i put it under her sheet so should be ok...

good luck with it over the next few months, i am still trying to come to terms with it as well and it is pretty horrible...

I hope you all go ok at the next check up...

Emma.

[Tammo]

Hi guys,

Reading I see there are a few new mums to this forum. I have only been on this forum for a few weeks and I can tell you I have read some great ideas and these girls are so supportive. I guess we can all share from our experiences.

Monica & Emma - I too have a little girl in a spica, this is our third one. I found putting a sanitary pad in the nappy only seemed to soak the urine and have it sit there and it leaked up into it anyway. Like Haileys mum, I found putting a newborn or infant nappy as far up the back of the spica and shoving it in the front and them putting a bigger nappy over the top was the best solution. I use a fair bit of powder too!!! I dont think there is anything that will stop a little bit getting back there, and it does smell. I find that the worst part. And it only takes one good soaking to do it!!! I find dresses to be the best option for day wear for her. And sleeping at night - we have put a pillow under her mattress where her head and shoulder blades are just to elevate her slightly, also we roll a blanket under her ankles so there is no pressure there. We try to keep her as elevated as possible through the day also to stop any runs down the back.

Paula - Not sure if you have tried the plastic and shower yet. All I do is a good old fashioned sponge bath. I wash her hair under the kitchen tap while supporting her head and shoulders and now that it is warmer weather I just sponge as much water as I can over her being careful not to get any down the spica. I feel like I am ripping her off every time I do this, as she loved her baths!!!! But she has learnt to love this just as much.

Our little Eleni hates tummy time with the spica on also. I hate doing it to her. But I try to do it a few times a day, just to take some pressure off. She loves just to sit on my lap facing me, I am lucky as her legs are far enough apart that she fits perfectly there!!! I also lay down and have her sitting on my tummy. I try to have her in as many different positions as possible. Carrying her can get a little tiring after a while though and I have bruises on my hips from carrying her there!!!

I know exactly how you guys are feeling. I am still trying to deal with the emotional side of all this. Every time I look at Eleni, I feel like she is missing out on so much. I guess I feel like I am too. We all dream of our little ones happy, rolling, crawling, walking, running, and it breaks my heart to see her like this. And she does get so frustrated sometimes.I think it is harder on the parents than the babies. They really dont know any better. And they will forget all about this, we are the ones that will carry the emotional scars!!!! I was to the point where I did not want to go anywhere and see all those "normal" babies, doing what babies should. I really struggle. Now I am trying to take one day at a time, and just trying to have as much fun and make her as comfortable as I can. It is good to see the mums that have been through this and live to tell the tale write on here, because you can kind of see the light at the end of the tunnel. It will get better.

We are off to Syd on 11 Dec to hopefully just have a spica change. We still have not heard anything from the CT scan we had 3 weeks ago!!!! I am just crossing my fingers that we dont get up there and they decide to operate this time.

Hope all you guys are well, and your precious little ones too.

Take care.
XXX

[MonicaP]

Hi Everyone,
Thanks for the tips. My daughters name is Hayley as well!!
We don't have Aldi nappies over here so I will definitly try the Huggies newborn.
I will also try the rolled up towel when Hayley is on her tummy. We are very mindful of her back as well. I would hate for the dysplasia to be corrected and then end up with a back problem.
I think the sleep issue has sorted itself out now. Last night she only woke up 4 times and tonight she went down with only a little grizzle, so cross fingers she is getting back to her own sleep habits. We have put rolled up face washers under her heels to help support her cast.
I am lucky with the clothes aspect as my mother-in-law is a dressmaker and she is busy making me some little clothes that will fit around the cast.
Emma- I think putting the quilt under the sheet would be fine as well. If it makes her feel more comfortable then I think it's a good thing. What is the brace like? Is it very restrictive or does it allow for a little bit of movement? I wish you all the best with your little girl as well!
I am looking forward to our next appointment with the surgeon as I have 101 more questions that I want to ask him.
We were also told that if we have any more children then they now have a greater chance of having hip dyplasia. I am really worried about that. Is there any one who has had more children that didn't have it. Hayley doesn't fit the criteria at all. She isn't our first (we have a nearly 5 year old boy who is fine) and she wasn't breech. We wanted to have another child but are now having second thoughts.
Thanks again for all you tips and suggestions and I will definitly take them on board, it's good to hear from people who are going through or have been through the same thing!
Monica

[cannedemma]

Hi Everyone,
Thanks for the tips. My daughters name is Hayley as well!!
We don't have Aldi nappies over here so I will definitly try the Huggies newborn.
I will also try the rolled up towel when Hayley is on her tummy. We are very mindful of her back as well. I would hate for the dysplasia to be corrected and then end up with a back problem.
I think the sleep issue has sorted itself out now. Last night she only woke up 4 times and tonight she went down with only a little grizzle, so cross fingers she is getting back to her own sleep habits. We have put rolled up face washers under her heels to help support her cast.
I am lucky with the clothes aspect as my mother-in-law is a dressmaker and she is busy making me some little clothes that will fit around the cast.
Emma- I think putting the quilt under the sheet would be fine as well. If it makes her feel more comfortable then I think it's a good thing. What is the brace like? Is it very restrictive or does it allow for a little bit of movement? I wish you all the best with your little girl as well!
I am looking forward to our next appointment with the surgeon as I have 101 more questions that I want to ask him.
We were also told that if we have any more children then they now have a greater chance of having hip dyplasia. I am really worried about that. Is there any one who has had more children that didn't have it. Hayley doesn't fit the criteria at all. She isn't our first (we have a nearly 5 year old boy who is fine) and she wasn't breech. We wanted to have another child but are now having second thoughts.
Thanks again for all you tips and suggestions and I will definitly take them on board, it's good to hear from people who are going through or have been through the same thing!
Monica

Hi Monica,

The brace Charlotte is in is ok, its not nice but she does still have some restricted movement in it and she is allowed it off for an hour a day for baths and a bit of a kick around so for us it is alot easier to cope with... it is also quite lightweight so doesnt make her any heavy, but is of course a bit awkward to hold her in... also it is leaving some marks on her skin from pressure points so when i go tomorrow i am going to see if perhaps it is a little small...

Fingers crossed for you then that Hayley will sleep through the night now! The extra support under the cast will definitely help because it must be heavy for her the poor thing...

I am also worried about the risk with more children but Charlotte is my first and we really want more than one so i think we will definitely have more, i know for sure they will check the next one at 6 weeks as well though!

It is nice to have support and so far this website has helped so much!!

Thanks to all on here!

[Tammo]

Hi guys,

I have been reading and see that there a few new mums to the forum. I have only been using this forum for a few weeks and I have found it to be a great help. The other mums that have been through or going through the same thing have some great ideas.

Emma, Monica - I know how you guys are feeling. I was devastated when I found out our little girl Eleni had a dislocated hip and needed to be put in a spica. Then after the second plaster the doc told us that she would need surgery and my heart broke. Luckily they are trying the spica again (this is now our third one!!) and hopefully we will not need the surgery. I have trouble dealing with the whole situation emotionally every day. I still cry an awful lot. Physically we do what we have to do as parents, but it is so hard to watch your little babes go through this. I was to the point where I did not even want to go out, because I did not want to see all those "normal" babies doing what little babies should be doing. I feel like Eleni is missing out on so much as she is so restricted. I guess I feel like I am missing out also. All you want is for your children to be as healthy and happy as they can. Now I am just taking one day at a time. And all I can do is try to make her as happy and comfortable as possible. It is the hardest thing I have ever had to do. I have found this forum to be a great comfort too. It is nice to hear from the mums that are going through the same thing and to hear from the mums that have already been through it and lived to tell the tale!!!

As for the nappies and the whole smell issue, I use a newborn nappy stuffed up the back as far as I can. Then a larger nappy over the top. I use a fair bit of powder too. You cant really help the smell. And I find it really hard to deal with sometimes. Our little girls are meant to smell all beautiful!!! I sponge bath Eleni and I feel like I am ripping her off as she loved her baths, but she has learnt to love this just as much. I wash her hair under the kitchen tap and sponge as much water over her as I can without getting any down the spica.

When ever Eleni gets a new spica on it takes her a good week or two before she is back to her normal sleeping habbits. She is sleeping through the night now. And I use a rolled up blanket under her ankles to take the pressure off also. The doona under the sheet sounds like a great idea too!!! Might give that one a go. I am ever so careful with Elenis back. I am also really worried about hurting her. I find she hates it on her tummy and her favorite spot is sitting upright on my lap facing me or on my hip walking around. This can get a little tiring though as she is so heavy and my hip has the bruises to proove it!!! They are just so awkward arent they.

We are back up to Syd on 11 Dec to hopefully have a spica change. Hopefully they will not decide to operate (fingers crossed!!!). That will stay on for 6 weeks then hopefully into a brace for 9 months. Still have not heard anything back about the CT scan. It is like banging your head on a brick wall sometimes isnt it.

Hope everyone is good and well, and hanging in there. Take care.

Tammy
XXX

[nicoli]

Hi all

Sorry I have not been any help with recent posts. My daughter Scarlett has not been in plaster (yet) only a pavlik harness and dennis brown brace.

I think whatever the change that occurs - it takes a little while for the bubs to settle back to their old self and normal sleeping habits. I too put a folded quilt under Scarlett when she first went into her harness as she seemed to be in so much pain and would wake up screaming. The first few nights I rocked her in her pram in the loungeroom until she fell asleep. I then moved the pram into her room, then she eventually went back in her cot.

It can be very upsetting finding out that your baby has ddh but you can see from other people's stories that in the long run everything sorts itself out.

I just ofund out I am pregnant with my second child and now I am worried that this bub will have the same thing too. Another worry is that Scarlett will not be out of her brace (or worse still need an operation) before the baby arrives. I'll have to wait until Feb to find out how she is progressing.

Anyway take care all

Nicole