Hip Dysplaysia Support Group

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.

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

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

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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

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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!

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

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

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

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

Hi Everyone,
Thanks Tammy for your advice. I hope all goes well on the 11th and that this will be Eleni's last spica. My thoughts will be with you!
I understand how you feel about not wanting to go out because you see all the "normal" babies. I find myself looking at little babies legs and just wish I could see Hayley's again. I know I will eventually but it is hard. Also I wasn't prepared for the number of people that stare at her. I know they don't mean to be rude and they think it is probably rude to say something but when I took my son to kindy the other day one of the mums looked at her and said "Oh my god, what happened" and I actually appreciated that reaction because at least she said something and didn't just stare.
Hayley also loved her bath and had began swimming lessons which she enjoyed and all that had to be given up.
I had her at the clinic nurse on Tuesday and she has lost a bit of weight since the spica went on. She told me not to be worried but I am a little bit. Did this happen to anyone else's child after having the spica and/or the brace put on.
Hayley is getting better being on her tummy. The nurse suggested that we prop her on something so I put her on a little cushion which she seems to like better.
All the best to everyone!
Monica

Hello everyone

Sienna had her operation last Monday and they ended up having to do an open reduction (cut in the groin) to put the hip back in the right spot. Her spica is from under her arms right down to her ankles - very high! Even the nurses thought so.
Monday was pretty tough, lots of tears, from Sienna, myself and my hubby. But we got through it. Sienna slept through the night for the first two nights - probably due to the anaesethic. The last few nights she has woken twice, so she is getting better. She did not eat hardly anything for the first few days, but drank alot.
Thanks for all you tips on bedding and nappies. I am using the aldi newborn inside the spica and a bigger nappy on the outside. I am also putting a low pillow under her head and one under her feet at night. This seems to help.
Sienna was getting better as the week went on, then she got a high temp, was vomiting and we ended up at the hospital all day Friday. She now has a urinary infection and is on antibiotics. She is quite good today though - she does want lots of cuddles from us and is enjoying her bean bag we bought her to sit in. She does not like being on her tummy at all, and dreads nappy changes as we turn her over to put the newborn nappy under at the back.
Tammy - thanks for your advice on bathing. We used the kitchen sink for her hair and then sponge bathed her upper body and feet. We also just bought a plastic showerhead from the $2 shop to place on the tap, which helps immensely. I highly recommend it. Hope all went well in Sydney.....thinking of you.
I also feel for Sienna as she is missing out on lots of things. She especially loved her baths and swimming. Her plaster comes off in just over 5 weeks and then hopefully just a brace, depending on how she goes.
I now understand what you all said about the weight of her spica too. She is now 3kgs heavier and being 7 months pregnant makes it hard. I am getting used to holding and carrying her, but the worst is putting her in her cot as even with the gate down it is quite high and I am short. We also put her mattress up on the top level like when she was a newborn, this also helped with putting her back in.
Thanks again for all your support. I must go now and give my hubby a break.
Take care
Paula

hi everyone,

i just wanted to note that i hope Sienna is going ok and that she will handle the rest of the 5 weeks well also... i am amazed at how well Charlotte has adjusted to her brace (obviously has alot more mobility than a spica though)... she is actually able to sit up in the brace which is really good at 6 months but cannot balance without it!

Anyway i just wanted to say also that i hope eleni is doing ok now and has not needed surgery...

We have a fitting on 5th January which i am looking forward to because the brace charlotte is in seems to be rubbing and causing red marks on her bottom... so far no skin breakage but the red marks dont go away at all in the hour she is out of it and so i am worried it will develop into a pressure sore...

anyway, good luck to all and hopefully the next updates u all post will be good ones!

Hi All,
Paula- I hope Sienna is doing well and is adjusting to her spica.
Emma- I am so glad to hear that Charlotte is adjusting well and beginning to sit up as well. Thats great!
Hayley is also doing well and although we still have some bad nights her sleeping at night is getting better.
We had a fright tonight because when she woke up after her sleep her toes on both feet were blue. We were just about to rush her down to the hospital but then my husband suggested that we turn the aircon off and see what happens. It wasn't long before they were pink again. The poor little thing was just cold but it made us worry.
We had our follow up appointment on the 9th and it went really well and we walked away feeling quite positive which was nice. The surgeon said that it would be highly unlikely that they would put her into a third spica and she will just have to go into the brace for a bit longer if it is still not good after 3 months, which I am glad about because at least the brace can come off for a little while each day.
She is due to go in for a spica change on 6th Jan.
Hayley is 6 months old in a couple off weeks and due to start on solids. Has anyone got any suggestions on what to do for a high chair. Because of the spica she can't sit up so I was wondering what everyone else has done to prop their chn when feeding.
Good luck everyone and I hope you all have a great Christmas!!
Monica

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Hi All,
Paula- I hope Sienna is doing well and is adjusting to her spica.
Emma- I am so glad to hear that Charlotte is adjusting well and beginning to sit up as well. Thats great!
Hayley is also doing well and although we still have some bad nights her sleeping at night is getting better.
We had a fright tonight because when she woke up after her sleep her toes on both feet were blue. We were just about to rush her down to the hospital but then my husband suggested that we turn the aircon off and see what happens. It wasn't long before they were pink again. The poor little thing was just cold but it made us worry.
We had our follow up appointment on the 9th and it went really well and we walked away feeling quite positive which was nice. The surgeon said that it would be highly unlikely that they would put her into a third spica and she will just have to go into the brace for a bit longer if it is still not good after 3 months, which I am glad about because at least the brace can come off for a little while each day.
She is due to go in for a spica change on 6th Jan.
Hayley is 6 months old in a couple off weeks and due to start on solids. Has anyone got any suggestions on what to do for a high chair. Because of the spica she can't sit up so I was wondering what everyone else has done to prop their chn when feeding.
Good luck everyone and I hope you all have a great Christmas!!
Monica

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Hi Monica,

Hopefully Hayley will be all good and into a brace in January. For a highchair substitute I bought a "Snazzy Baby" Portable High Chair. It is a harness type thing that goes around any dining chair. We just place a pillow under Sienna and behind her head and she sits perfectly at the table with us. It folds into a little pouch so you can even take it with you if you go out for dinner too. It was $35 at baby bunting. Well worth it. There are a couple of different varieties on the market but it depends on the type of chairs you have at home. This sort suits all chairs - big and small! I hope this helps. I would post a picture, but do not know how.
Sienna has also lost weight, there seems to be so much room now in her spica. She is however eating better now.
I have not put Sienna on her tummy yet as even when we change her nappy and put her on her belly for a few seconds she cries. I might try doing it next week with the cushion under.
I hope everyone has a great Christmas with their little treasures. Take care and stay safe.
Paula

Hi everyone

I hope everyone has a safe and relaxing break over christmas. I feel for all you guys who have bubs in casts at the moment and hope they are able to enjoy all the attention (and presents).

Nicole

Hi Paula,

Thanks for the tips on what to use for feeding. I will have a look for the 'Snazzy Baby'.
Hayley also hated being on her tummy. When I asked the clinic nurse about it she said that that was because when they lift their head on their tummy they use alot of tummy muscles and now those muscles are restricted because of the spica which makes it more difficult. She also suggested a cushion and when she starts to grizzle to take her off her tummy (we were told by the cast technician that she needed to be on her tummy for 1/2 an hour at a time, which is impossible!). The cushion worked well for Hayley and although she still only stays on her tummy for a little while she prefers to be on the cushion ten flat on the floor.
I hope the cushion works for you and Sienna and thanks again for the high chair tips.
Have a great Christmas and New Year!

Monica

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Hi Paula,

Thanks for the tips on what to use for feeding. I will have a look for the 'Snazzy Baby'.
Hayley also hated being on her tummy. When I asked the clinic nurse about it she said that that was because when they lift their head on their tummy they use alot of tummy muscles and now those muscles are restricted because of the spica which makes it more difficult. She also suggested a cushion and when she starts to grizzle to take her off her tummy (we were told by the cast technician that she needed to be on her tummy for 1/2 an hour at a time, which is impossible!). The cushion worked well for Hayley and although she still only stays on her tummy for a little while she prefers to be on the cushion ten flat on the floor.
I hope the cushion works for you and Sienna and thanks again for the high chair tips.
Have a great Christmas and New Year!

Monica

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Thanks Monica, I will give the cushion a go and try for 30mins a day. But as you say, that is going to be hard.
Can anyone help me in regards to when we should take Sienna's tape off her open reduction wound. The nurses told us 7-10 days, we tried last night which is just over 2 weeks and it looks like we pulled a stitch. I am a bit scared to try again, apart from the fact that Sienna absolutely screamed from the pain of pulling the tape. I assume we need to do it to give the wound some air and to heal properly. Any advice would be great.

Take care all
Paula

Hi Paula,

Hayley had a closed reduction but they did nip a tendon to relieve some tension and although she didn't need a stitch she had tape over the wound. When she was 7 weeks old she had a double groin hernia repair and after that surgery she had dissolvable stitches and again tape over both wounds. After the hernia operation the surgeon told us the tape will come off by itself and in both cases the tape just slowly started to lift by itself and after about 10-14 days we were able to take it off very easily and it didn't hurt her. Also today we had a bit of an issue with Hayley's cast and I just rang the hospital and spoke to someone there and they were very helpful so maybe ring the hospital and see if someone there can give any suggestions. My GP has also been very helpful with any concerns or queries I have had regarding the spica. I hope that is of some help to you.

Monica

OOh I havent been in here for ages...for those of you who dont know me, my dd1 was diagnosed with cdh at birth. At 5 weeks she was put into a Pavlik harness and was harness free by 8 months:) In November last year, she was given the all clear.

2 weeks later, dd2 was born. She has positional talipies, which are looking good. The Pead thought he could feel a click, he physio couldnt and neither could the orthopaed surgen. Since being home in the past 7 weeks, the chiro cant feel a thing, neither can the health nurse nor the gp.

Today we are going for Rebeccas hip ultrasound. Next week we have the orthopaed review. I am quietly confident that things will be ok, but there is a little niggle in the back of my mind, expecting the worst. At least I know that its a hard journey, but things WILL be ok in the end. So I just thought I would pop in and let you know where I am at....

all the best to everyone and your hip kids:)

Melissa

HI Everyone,

I hope you all had a good Christmas and New Year.
Hayley had her spica changed yesterday and boy were we glad to see the back of the old one, it had definitley seen better days!
The surgeon was pleased and said that the hip felt stable in the socket and this cast stops at her ankles as her feet had swollen. I am so happy to be able to see her little feet again.
This cast also doesn't have a bar across it so it is so much easier to give her a cuddle.
She is in this cast for another 6 weeks and is getting measured up for her brace in 4 weeks.
Melissa- Congratulations on the birth of Rebecca. I am glad that all looks well so far and I hope everything went well with the ultrasound today and the review goes well next week.

Monica

Thanks Monica, the ultrasound went ok yesterday, I asked loads of questions and because I had been there before with Olivia, I knew which questions to ask to satisfy me. Basically Rebecca has above 70% coverage on both hips which is fantastic, Olivia had only 23%, and they werent able to dislocate them either. The only concern that they have is that the left hip cup is a bit rounded and they are not sure if this is because it is still cartlidge. I have been booked in for another ultrasound in 6 weeks and we are seeing the orthopaed next Thursday to discuss the results. Am hoping for no treatment, but if we do have to going on those figures of coverage and the inabitlity to dislocate the hips, it will be minimal....I hope:)

Hi everyone, I'm new here, my second daughter, Addison, was just born on December 10th, and at her first appointment, not even a week later, the pediatrician felt her left hip click and sent us for an x-ray(I didn't think x-rays worked in babies under 6 months, but ah well). They then sent us to a pediatric specialist and he said he did not feel anything, but sent us for an ultrasound anyways. After about a week, he called and said that she does have dysplasia and that we needed to get her in a pavlik harness asap. We went to an orthotist and got a very uncomfortable harness and when I got home and looked over the instructions, saw that the guy fit it wrong. He had the chest strap down around her stomach, and the legs wernt flexed at all. So i took it off of her and fixed it myself the best i could and made an appointment to see a different orthotist, who gave us a much better harness(more comfortable looking too), and also said that I did an amazing job adjusting it, and that I must have done alot of research.. Addie seems to be doing ok in this new one, but they never told us how bad it was or anything, everyone has been very vague on ever aspect and its very frustrating. Also, I am having a hard time breastfeeding her, as I am a larger woman, and can't seem to find a comfortable position(any tips?) also, what the heck am I suppose to dress her in? Right now, I just keep her in tee shirts and socks, and then in a sleep sac for bed, but to go out, what can I do? any tips or tricks would be great, thank you all so much!

Witchymommy - my DD was in a Pavlik Harness from 7 weeks through to 5mths. Well done firstly on picking up the harness was not fitted correctly - that is just not good enough. I dressed DD in clothing that was generally a size bigger than what she would have been without the harness. I found seperates to be be good ie. t-shirt and leggings, dresses also work but I didn't really do a alot of dresses, romper suits also worked. On hotter days (and remember the Pavlik harness is like a layer of clothes so you have to be careful of not dressing too heavily) suits with no legs were perfect.

Breastfeeding I actually had no problems with but that was largely because my daughter was so small and light (born 5lb 14oz) she was easy to move around.

Feel free to ask any questions and I will try and help.

Hi Witchymommy - my daughter Scarlett was also in a pavlik harness from 3 - 5 months and at first they seem very uncomfortable in it. By the end Scarlett was quite a happy little thing kicking her legs out to the sides in her harness. I mostly dressed her is oversized dresses (which have been great this summer as they all fit her propery now!) we were also allowed to loosen the chest strap to give her sponge baths and I manages to thread a thin jumpsuit under her harness every time I gave her a bath. It was difficult but it stopped any rubbing from the upper straps.

I also had a bit of trouble breastfeedind at first and people tried to give me adivce on what they thought were good ideas. My physio suggested holding her parellel to my body which was nearly impossible! You just have to try things out until something works for you. I used to lay Scarlett on her back across my foerarm and she twisted her neck around to drink. People said she looked uncomfortable but she continued feeding like this even when she came out of the pavlik harness and wen into a dennis brown brace.

Hopefully everything will seem easier for you soon enough.

Nicole

Hi Everyone!

Withcymommy, good luck with everything with your daughter... i do not know much about the pavlik harness as my daughter was too old for that when she was diagnosd so shewent straight into the dennis brown brace... But one thing i have heard is that usually with pavlik harness healing time is faster?? Could be wrong but i think the younger they are when it is picked up the better... My daughter was just shy of six months and they said could take up to twelve months to fix but i have my fingers crossed at the next xray that she may be healing faster than they expect!

In terms of clothing i found it really hard too at th start... i actually think summer clothes are much easier... my daughter lives in bonds rompers... they come in pretty colours and patterns and are really easy to change nappies etc and are thin so they dont overheat in warmer weather... In cooler weather i use leggings and a t-shirt or overalls that button in the crotch... if u know a dressmaker u could probably get them to adjust some of the clothes to put buttons or velcro on to make it easier...

Anyway, good luck to all with their babies! I will update when i have had my xray!

Hi girls....well here is Chloes Story :)


I was in the bath with her around 4 months old when I noticed a clicking sound, my heart sank as I new what was coming, I took her to the health nurse who checked her hips and she told me to take her straight to the doctors, so I did that, the GP had then straight away rang the Marter Childrens Hospital to get a referal, that afternoon they rang me for an appointment the next week :(

November 25th 2008: Ortopedic Appointment, 2day Chloe was fitted with a Pavlik Harness, was a bit upset seeing her go into it, but she done well....

November 27th 2008: Chloes first hip ultrasound, results: Angles 35 degrees and 40 at the time her left hip was the worst....

December 9th 2008: Ortho. App. still no change :(

December 16th 2008: X-ray appointment

December 19th 2008: Ultrasound Appointment

December 23rd 2008: Orto. App. Left hip Ok right hip not Ok :(

Chloe then developed a really bad rash (not good) its been 9weeks (27th Jan 2009) rang the Marter and they told me to take the harness off her, as the rash comes first at this stage.... She cant move her right leg, kicks her left like anything

January 30th 2009: Ultasound and X-ray, still not better, something about soft tissue in the right hip socket :dunno:

Well she is now 6months and 3weeks her next Ortho. App. is on Tuesday the 3rd of Feb. really not looking forward to it, they (drs.) told me last app. that the next step would be a spica, I just feel like its my fault and I just want to cry all the time when I look at her.....I feel so bad and its only going to get worse when the day comes for surgery and cast..... Thats Chloe's story for now..... Take Care All xxxxxxx

Hi all,

I am new to this thread.

My little girl (first born) was diagnosed with severe hip dysplasia 2 and half months back just short of 6 months old.
She was put in a DB Bar and seems to be doing quite well at this point (rolling,crawling and sitting up).

I was just wondering how long other babies, diagnosed at this age, needed to be in the brace, and how well did this work, or is it likely she will need further treatment? (ie surgery or spika)

Thankyou in advance,
Jo

Hi Everyone,
Welcome Jo! My daughter Hayley was diagnosed with hip dysplasia of the right hip at 4 months (she is now 7 months). Luckily she didn't need surgery as they were able to place the hip in manually but she had to go into a spica. We have two more weeks left (in total it has been on for 3 months with a change after 6 weeks). She is then going into a brace for 2 months, 4 weeks fulltime allowed off for baths and then 4 weeks only when she is asleep.
This is best case scenario as the surgeon told us if it isn't where they want it to be then she will have to be in the brace longer and he wasn't really willing to say how much longer. When they changed her spica he said the hip felt stable which was a good sign but I guess it's one of those things we just have to play by ear. He hasn't mentioned the possibility of surgery just that the brace may have to stay on longer. I hope this is of some help to you.
I wish you all the best Jo and I hope the DB bar does its job.
Monica

:

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Hi all,

I am new to this thread.

My little girl (first born) was diagnosed with severe hip dysplasia 2 and half months back just short of 6 months old.
She was put in a DB Bar and seems to be doing quite well at this point (rolling,crawling and sitting up).

I was just wondering how long other babies, diagnosed at this age, needed to be in the brace, and how well did this work, or is it likely she will need further treatment? (ie surgery or spika)

Thankyou in advance,
Jo

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hi jo,

your circumstances sound pretty much the same as mine, my daughte charlotte went into DBB just before 6 months, she gets checked on 6th March to see how its progressing and to be honest it is in the back of my mid that she might need further intervention like surgery or a spica... fingers crossed she doesnt... my orthotics lady at the RCH melbourne told me that it is unusual for the DBB to fix a baby at this age within 3 months, so i asked if it is more like 6 and she said usually more like 9 or 12, but fingers crossed all ound that it is faster!

how does your daughter handle the brace? it is great that she is rolling... did you do anything to encourage that? Charlotte will notroll in hers, she sits up and she can move around really well in reverse and circles... she is getting up on all fours and trying to crawl but cant move her legs independantly... how does your daughter crawl?

i hope that what i have said isnt upsetting, and after i have been for her next appt i am happy to give an update... (perhaps u can do the same for me as i think our babies musst be almost the same age!!) charlotte was born 3rd june...

anyway good luck!

Hi All,
Kell 4- I hope all goes well tomorrow at your appointment.
My daughter Hayley went straight into a spica at 4 months, we have two weeks left and then a brace for 2 months (hopefully that is all).
It was really hard for my husband and I at first and I was an absolute mess in the hospital on the day it went on, but you do get used to it and although Hayley was terribly upset for the first 24 hours after that she was fine and has been her happy self ever since. She adapted far more quickly then her mum and dad.
I hope this is of some help and I will be thinking of you tomorrow. Let us know how it all goes. If you have any questions about the spica feel free to ask.
Monica
XXX

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hi jo,

how does your daughter handle the brace? it is great that she is rolling... did you do anything to encourage that? Charlotte will notroll in hers, she sits up and she can move around really well in reverse and circles... she is getting up on all fours and trying to crawl but cant move her legs independantly... how does your daughter crawl?

i hope that what i have said isnt upsetting, and after i have been for her next appt i am happy to give an update... (perhaps u can do the same for me as i think our babies musst be almost the same age!!) charlotte was born 3rd june...

anyway good luck!

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Hi Cannedemma,

Thanks for your feedback, nothing upsetting (Ithink we've studied all possibilities nad are ready for anything). The doctors just won't say anything straight out these days!
Beth handles the brace really well, initially she went a little quieter than usual, but after a week she was back to her old self.
She just figured out how to roll all by herself (she's pretty determined), she kind of pulls one foot up near her head which makes the other one go out, it's quite comical to see, as for crawling, she sarted just getting up on all fours and rocking around, then suddenly she was off, it actually looks like a pretty normal crawling movement, as one leg pulls forward the other stays back, a little like a see-saw.

We have our next appointment on thursday, so I will let you know how things go.

:

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Hi Everyone,
Welcome Jo! My daughter Hayley was diagnosed with hip dysplasia of the right hip at 4 months (she is now 7 months). Luckily she didn't need surgery as they were able to place the hip in manually but she had to go into a spica. We have two more weeks left (in total it has been on for 3 months with a change after 6 weeks). She is then going into a brace for 2 months, 4 weeks fulltime allowed off for baths and then 4 weeks only when she is asleep.
This is best case scenario as the surgeon told us if it isn't where they want it to be then she will have to be in the brace longer and he wasn't really willing to say how much longer. When they changed her spica he said the hip felt stable which was a good sign but I guess it's one of those things we just have to play by ear. He hasn't mentioned the possibility of surgery just that the brace may have to stay on longer. I hope this is of some help to you.
I wish you all the best Jo and I hope the DB bar does its job.
Monica

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Hi Monica,

Thanks for your feedback, I'm just trying to get a real outlook on the chances of th\e DB Bar working, the doctors and Orthotics all have diferent stories.
I'm glad the Spika helped with your little one, they adapt to the brace pretty well I've found.
I'm just hoping we can avoid surgery, I can't bear the thought of my little angel being wheeled off and cut open, if that means the bar for a while longer, then that's fine with me.

Anyway, good lauck with everything, I hope it all works out for Hayley.

Jo-O - my daughter Scarlett has been in a DB brace for almost a year now after spending 3 months in a pavlik harness. She is now 18 months. She started off wearing the DB brace for 23 hours a day and then only at night as there was a quick improvement. Since then however there has not been enough of an improvement to be brace free entirely and our orth say there is a 90% chance she will need an op before she is of school age to completely correct her right hip. We go back for our next appt next Tuesday after 6 months, and we expect her to come out of the brace as we were told it will not make any difference after 18 moths of age. Worst case is that since starting walking 4 months ago her hip has deteriorate in which case she may need surgery now. Best case is it has improved and won't need surgery at all. That is obviously what I am secretly hoping for.

As for her development in the brace she can roll, crawl and stand up in her brace now but becasue she is only in it in bed she doesn't really get to test it out much. She has become so accustomed to wearing in that after her bath when we are getting her ready for bed she says "brace". I am actually a little worried how she will go at night without it.

Kell - I hope you are doing OK becasue I am sure Chloe will be fine. It's always us parents who beat ourselves up over it. It is so sad to see your baby with limited movement and the frustration on their face, but it does get better. In the beginning I used to cry every time I looked at Scarlett in her harness and then I felt guilty for crying all over her! I hope you got some answers at your appt.

Take care all

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Hi All,
Kell 4- I hope all goes well tomorrow at your appointment.
My daughter Hayley went straight into a spica at 4 months, we have two weeks left and then a brace for 2 months (hopefully that is all).
It was really hard for my husband and I at first and I was an absolute mess in the hospital on the day it went on, but you do get used to it and although Hayley was terribly upset for the first 24 hours after that she was fine and has been her happy self ever since. She adapted far more quickly then her mum and dad.
I hope this is of some help and I will be thinking of you tomorrow. Let us know how it all goes. If you have any questions about the spica feel free to ask.
Monica
XXX

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Hi MonicaP and All

well at the ortho. app all was not well, my baby chloe who will be 7months on the 10th Feb. is only 6.3kgs and needs surgery on her right hip and a spica, Im sooooo damn scared she is sooooo little :( I dont know what to do and its going to get worse the day of the opp. (still un-known) please feel free to add me to msn:kell27-4@hotmail.com I dont know wat to expect, im sooooo lost my poor baby dont know what she's in for yet and we got 3other kiddies to look after, its going to be sooooo very hard, xxxxx take care to all

hi folks,

I'm hoping to pick your brains pretty pls!! We've been referred by our paediatrician for an u/s as my 4 m.o. DS has a "clicky" left hip - only just picked up in the last few weeks by our MHCN. In all previous checks by MHCN, paed & GP he was fine. So in regard to the u/s I was just wondering if there are any particular questions that are useful to ask or information to watch out for? Our u/s is midday on Monday. And do you know if you usually get the results on the spot? Or did you have to wait?

I guess I'm particularly wary cos i've got a girlfriend who's bub has DDH and she was initially told it was really minor and to go see her paed a few months later... when she rang him to double check, after reviewing the case he said no, it's not minor come straight in and her bub has worn a brace since. So I guess I just want to make sure I don't get fobbed off or delayed if it's potentially risky.

TIA,
Belfie

Hi All,
Kell4 and Belfie my heart goes out to you both. I know exactly how you feel.
Kell4- To give you some idea of what to expect the spica Hayley went into went from her waist to her toes and had a bar across it between the ankles (they leave a hole around the groin area). It was very upsetting to see at first and also hard because she was also upset. However she did adapt to it very well and by the next day she was fine although it took alot longer for me to get used to it, it is very hard to see your gorgeous baby in a spica and I cried alot for the first few days. Hayley is also 7 months now and weighs 6.5kg and like I said before she adapted very quickly to it. It did affect her night sleep for awhile but we were told to expect this. I also have an older son and after some intial questioning he has been really good and understanding with her (he is 5). Hayley is completely immobile in her spica so we have to make sure that we are alternating her positions alot so she isn't always in the same postion ie on tummy, laying down, propping her up (a bean bag is good for this). We have two weeks left in the spica (it has been on for 3 months with a change at 6 weeks and 10 weeks) and then she goes into a brace for 2 months. The x-ray we had last wednesday showed the hip to be nicely in the socket so although it has been difficult to see her in it, it has so far done its job.
Belfie- Hayley was four months when her dysplasia was detected (missed by 2 paeds and a clinic nurse). She has it only in her right hip. It was a clinic nurse (a different one) who picked it up. She wrote a letter which I took to my GP the next day. He sent me for an x-ray and we got the results that day. He then referred me to a paediatric orthopedic surgeon and I got in a week later (we asked to be put on a cancellation list so got in a bit earlier). He said that although she was only 4 months its not as early as they like to find it so she had go into a spica for three months. He put the spica on about 5 days after our first appointment. I would think you should get the results of the u/s back the same day and then get in to see the ortho as soon as possible, so that everything should happen quickly. From the time of detection to the time the spica went on was 2 weeks. Questions I asked included developmental delays eg rolling, crawling etc, length of time spica and brace will be on for (5 months for Hayley if everything goes the way it should). I found that our ortho explained alot to us in the initial meeting and my questions just stemmed from that conversation.
Please feel free to ask me any questions as I know your heads are probably swimming at the moment. I hope I have been of some help and I wish you both well!
Monica

Belfie - while my DD situation is a little different - she was picked up at 6weeks the process from the ultrsound should be similar. We were told at the ultrasound there was a problem and that the results would be sent straight to the paed who would then make an app. to see us. The paed actually called that afternoon who said he had arranged for us to see an orth surg the following week (we didn't need to go and see the paed). We saw the orth surg the following week. At the app he explained what would be happen. Be aware they are generally very reluctant to give time frames because every child is different. It is only after they have seen how the treatment is going that they will give possible timeframes. That certainly was one frustrating part. DD was in a pavlik harness and that was fitted at the Children's Hospital the day we saw the orth surg.

We saw the orth surg as a private patient apparently that does make a difference to the time frame but that was just something a physio said to us that we were seeing for a seperate issue with DD.

Hey Belfie- good luck with your appointment today. In reguards to questions.... I asked loads of them at Rebeccas u/s because I knew all about DDH as Olivia was in a Pavlik Harness for a good while, so I am up with the lingo so to speak. I think you should ask if the hip is in place. Does the cup cover the ball, is the ball formed, is the cup formed, is the hip dislocatable, what is the coverage in percentage? Thats the basic terms for it. They are looking to see if the hip is formed properly and sitting in the correct position and if it can come out easily or not.
As for results, I went through public at Monash and we get our results a week later at the orthopaed clinic.
For us its been very different this time around. When Olivia had her first u/s they didnt say much....basically her hips werent formed and they didnt want to give us bad news!!!.....we waited a week for that!
With Rebecca, because i knew what to look for and they knew my first had hip dysplasia, they were open and honest with me. Rebecca has a rounding of her left hip cup, so we have to go back next week for another u/s and then followup orthopead review.

All the best....sorry if I have rambled...lack of sleep!!!

Monica, Bridee, Minimatron - thank you so much for the info, it's really helpful!

I've listed the questions below that I've gleaned from all of you (figure it might be handy for someone else one day too - plus helps me organise my thoughts lol):

• Is the hip in place?
• Does the cup cover the ball?
• Is the ball formed?
• is the cup formed?
• is the hip dislocatable?
• what is the coverage in percentage?
• When/how will we get the results?
• Questions for orth surg: developmental delays eg rolling, crawling etc, length of time spica and brace will be on for...

I've been told to call my paed's rooms to let them know once it's been done, but I do hope we'll get an indication at the scan. So saying, my paed is only in his rooms every friday so I suspect if there is anything, it'll be just a referral straight to an orth surg.

Thank you so much for the info, it's really helped - and even though it's made me nervous, I'd rather be prepared & informed. A bit of worry is a small price to pay. And I hope all your little ones are going well :hug: and Minimatron - good luck with Rebecca's next u/s.
Belfie

Thanks again, I'm very pleased (and lucky) to be able to say that he got the all clear at the u/s today. I really appreciate the support & information... I actually had hesitated to post in here cos I didn't want to be like this big drama queen when we didn't even know if we had it... but your information was really great and helped me feel prepared. Minimatron, I basically pretended I knew HEAPS to get her to talk about it, and it really worked well - using the "lingo".

I wish all your bubbas the best and hope they continue to go well & improve. I think you're all doing such a great job, and I can only imagine how challenging it is :grouphug:.

Thanks,
Belfie

Thats great news. And dont think of yourself as a drama queen, its all very worrying when you dont know whats going on with your bub and all the what happens if....