Hip Dysplaysia Support Group

[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.

[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

[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.

[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

[MonicaP]

Hi Everyone,
We have survived one week in the spica cast and things are starting to return to normal. At least I feel like I am starting to accept it.
I was looking on the net tonight about dysplasia and found a medical article that said that there is a 6% chance of your second child having it if your first one does. That means that there is a 94% chance that it wont. Those odds are pretty good.
Once again thanks everyone for your advice and support. I have taken it all on board and although I can't wait until its a thing of the past, I am dealing with it a whole lot better!
Monica

[minimatron]

Hey Nicole...congrats on your pregnany. wishing you a happy and healthy one.

As you know, Olivia was given the all clear last month. i asked about our new one as i was 36 weeks pg then. The specialist said that she has a slightly higher chance of having ddh. he recommended a scan at 6 weeks and an ortho review. Well dd was born just over 2 weeks ago. they couldnt feel a clunk like Olivias hip. We have a review in jan. The health nurse yesterday couldnt feel anything either...so heres crossing fingers. I know your anxiety nicole, I remember asking the same questions. I hope this relieves some of it for you.

All the best to those who are embarking on the journey of hips!!! its a hard time, but it does get better. olivia is 20months now and shes doing so well.
Melissa x o