Hip Dysplaysia Support Group

[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

[MonicaP]

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