Hip Dysplaysia Support Group

[minimatron]

Oh hun, big hugs to you. This is a very normal reaction to go through and we are all here to support you. It is tough and challenging, for both you and your dd, but there is light at the end of the tunnel. I cant help you with the questions you have about surgery, as my dd had a pavlik harness, but there are many wonderful ladies here who will be able to answer your questions.
Take care,
Melissa

[Haileys Mum]

Hi Alexandra's Mum,

My daughter Hailey had surgery on her Left dislocated hip on 1/3/08. She was 8 months old and had 2 dislocated hips but only one needed surgery. I can't speak for anyone else but in hindsight the worst part for us was waiting for hailey to have surgery after they gave us a date. Her surgery was a breeze, she was a real champ. The first few days after surgery are a bit tough but on day three we made a five hour car trip home in a hip spica, plaster from nipple to ankle. By this stage she needed panadol a few times but after about 5 or 6 days she had no panadol again, she was not in pain and definatly not uncomfortable. She learned to drag herself around in the plaster. She is not "better" and won't be for a long time, but we go swimming and she crawls around like a "normal" baby. She is actually just starting to pull herself up on furniture. She is at the same stage as some babies and a bit behind some others. But she is a happy otherwise "normal" kid who has lots of long car trips to Melbourne!!
Please ask me anthing that you think I can help you with.

Kindest regards

[Alexandra's Mum]

Thank you Minimatron and Hailey's mum for your replies. It helps so much to know that others understand.
Hailey's mum, your comments about your DD have helped me to believe that she wont be left behind. My DD is crawling backwards at the moment, although in the short time she had the DB Bar on and did not do any standing she has completely forgotten about it and cannot do it. I do hope she also develops and crawls/stands etc even id she is in the plaster for a while.
I am assuming you are visiting the RHC, have they indicated how long you will be in plaster for and then how long in a brace? It sounds like such a long process for everyone in this position regardless of whether it is a brace alone or plaster and brace.
It is great to know that I can vent and discuss this on here, as my husband does not like to talk about it at all and prefers not to know anything until the doctors tell us about it.
When DD is in plaster (Spica) do they fit in prams and cars eats? today i wanted to buy DD one of those walker toys (that don't move though) with the table in front of them to play etc.. but I am unsure as to whether she will be able to fit in it or even sit in it? Any sugestions with these sort of toys? Look forward to hearing back, thanks so much.

[Haileys Mum]

Hi There,

We have a surgeon from the RCH called Leo Donnan. He has been fabulous with Hailey. They are in the the hip spica following surgery for six weeks at a time. Hailey only had plaster for 6 weeks. Believe it not, that time will actually go really quickly. The time after the plaster in a brace is completly dependant on how quickly/slowly the hip joint grows while they're in plaster. usually 6 months to 18 months. Due to complications hailey only had the brace (rhino cruiser) on for 6 weeks. She now sleeps in it only. In the 5 weeks she's had it off, she has learnt to go from dragging hrself, to sort of crawling, to crawling properly and now standing on her own- easily and quickly.

We have Beema Q 3 wheeler pram and Hailey fitted in it no problem, as for the car sear you have to buy an extension stap from the RCH ($15) for you existing car seat and the nurses pad the seat to fit your daughter. You not be discharged from hospital until she is in a safe car seat.

As for the walker, definatly not. It's hard to imagine and I don;t know how to post any photo's of Hailey in plaster for you to see but their legs are very wide apart in plaster and so she won't fit in a walker. Even in the rhino cruiser, after the plaster, she probably won't fit.

The hardest thing I found was shopping. No way can they fit in a trolly. So i'd carry hailey in, drag a trolly, go staring to the coke isle and get a box of coke cans for her to sit over, in the trolley- worked beautifully! We fed her in the pram, or sitting on someone's lap, they won't fit in any high chair. But after plaster, get a "Dinky Diner" about $15 on ebay. Attatches to a chair and you tie them in. Awesome.

Hailey spent a fair bit of time propped up on cushions, sitting on our laps, sitting over (tied into) small chairs and dragging herself aroun. Pretty boring for them so it's toys that she can use herself while sitting still that work the best- such as books.

Hope this helps a bit. Please ask anything you like, I remenber how horrible it was before Hailey's surgery-just not knowing what was going to happen and what to expect.

Warm regards,

[Alexandra's Mum]

Hi
Thanks so much for your tips. I loved the coke idea in the trolley, made me smile and bought a tear on at the same time.
Will wait for our appointment to see Othop surgeon and take it from there. Int he meantime have bought her christening forward to the 19th July, so a bit hectic at the moment.
Will be sure to be back soon once i have some more news. Thanks for being so helpful.
Please keep us updated on Hailey also.
Connie

[LauraK]

Hi all, so sorry we haven't been on here for a while, I'm now back to work and feel like there aren't enough hours in the day so don't always get a chance to come on here as often as I'd like to. We are back to the hospital for an x ray tomorrow and we are dreading it to be honest. Things didn't look great last time. Harrison is starting to want to be on his feet more and more now and we are worried this is doing his hip more damage - it's really difficult as he is happy when he is on his feet and as everyone else has said it's always a worry that he wont develop as 'normal' baies do and so we don't want to stop him from standing. He is still wearing the brace at night and he is absolutley fine with this, our worry now is that he will need surgery. Hearing everyone elses stories about their babies surgery is so reassuring as they seem to deal amazingly with things.

Alexandras mum - we all sypathise with you and have an idea of what you are going through. This forum is so helpful and when Harrison was first diagnosed it was so comforting for us so read other peoples stories as we were not aware of anyone else in our area that were in a similar situation. Even 7 months down the line we still find this forum to be an amazing support. It's great to be able to share stories and tips to help us all get through the hard times that we have ahead.

We will let you all know how we get on tomorrow, take care everyone xx

[bridee]

Good luck Laura hope you get good results from the x-ray. Our specialist has always said never force DD legs/hips into a position but if she naturally does it then it is ok so if Harrison is wanting to stand, our specialist would say it is ok. But I totally understand your worry.

Georgie has her x-ray next week I just wish it would come to get it out of the way and we know where we are at.

[LauraK]

Hi all,

Bad news yesterday. Harrison needs to have surgery then go into a cast for 3 months. We always tried to expect the worst but we are absolutely devestated that it has come to this. The consultant said that his hip has not improved at all in the last 3 months and so we need to move on to the next stage of treatment. We have now been referred to another hospital so we are just waiting for news of an appointment with the new consultant. Since we found out I feel like I can't think of anything else, we are so worried about the actual operation and then how he is going to react to waking up with the cast on and of course how our poor little boy will deal with the weeks in the cast. Also he loves bath time and it is absolutley heart breaking to think that he wont be able to have a bath for 3 whole months. I'm now back to work so I'm starting to get worried about how much time off I will need, I just want to be with Harrison all the time but I know that this wont be possible - I'm just in a bit of a state at the minute I think!

Anyway, just wanted to update you all, sorry for ranting, hope everyone else is ok xxxx

[nicoli]

Laura - I am so sorry to hear your bad new about Harrison. I am crying just reading it. I am feeling the exact same way as you felt before your xray and Scarlett is in her brace at night only as well. I have also gone back to work recently and feel that I never get to spend enough time with Scarlett.

I know you know this, but everything will work out fine. At the moment I'm sure you are just thinking 'why me'? as I'm sure we have all felt. All you want is for Harrison to be healthy, happy and 'normal'. Scarlett is also standing up all the time and she is so delighted with herself that I just can't imagine how she would cope if that were taken away from her. Probably better than me!

Good luck with everything - hopefully Harrison will have his surgery quickly so you can get on with things. Just remember that we are all thinking about you both.

Connie - I am glad you have found some comfort through this forum. I know I would not have come this far without it. Good luck with Alexandra's surgery as well.

[bridee]

Hi All,

Just wanted to share our good news, Georgie had her first review since coming out of the harness and everything is good. Dr said it would be very very unlikely anything could go wrong from here as the hip is perfectly positioned so he recommended an x-ray when she is 5 - thats 4 years away!! So Georgie's birthday party on the weekend is a double celebration.

Thank you to everyone on here you have been tremendous support. I will still be popping in to check up with everyone's progress and offer support when needed.

[Alexandra's Mum]

Hello,

Birdee I am soo happy to hear your great news. Thats fantastic!

Laura, I am soooo sorry to hear about Harrison needing surgery, it made me cry. I understand how devestaing this news is for you, and I hope eberything goes really well for you. I have me fingers crossed that it all gets done quickly and as smoothly as it can go. Please keep us updated.
We still have no news on Alexandra's surgery, have an apt to see a doc at the RCH in 2 weeks time, and hope that they will shed some light and answer all our questions for us.
I hope everyone else is doing well too. Big hugs and my thoughts and wiches go out to everyone.

[nicoli]

Hi all

Tomorrow is our big day - xray and doctor appointment. I am trying not to think too much about it but am of course hoping for the best. I really don't want to contemplate the worst at the moment...

Nicole

[nicoli]

Of course we were hoping for good news on Scarlett's hips - but we didn't get it. The doctor said while her hips are showing a slight improvement, it is slower than it should be so we have to keep her brace on at night. Once she is 18 months (6 months time) they can't do brace her anymore and she will come put of the brace, but unless it makes a remarkable improvement before then, it is more than likely that she will need an operation to correct her hip some time before she is 5. Probably about 4 years old. I guess that is better than doing it now because then we can explain what is happening to her and at least she can learn to walk now and not have to be in a cast yet. Has anyone else heard of this line or treatment? Waiting until they are 4?
Nicole

[bridee]

Hi Nicole - sorry to hear you didn't get the good news you were hoping for. I haven't heard of waiting for the surgery but I guess along the same lines Georgie, while being given the all clear will have an x-ray when she is 5 as 1 final check. Apparently there is a slight chance of something going wrong but it takes a few years for it show up on an x-ray. So perhaps this is your Dr logics to wait and see if after a couple of years it has got worse and therefore surgery is needed. As I said at the start not sure but just an idea. I know if it was me I would actually prefer to get the surgey over and done with rather than waiting a couple of years. I know 6 mth wait for her check up was bad enough let alone a couple of years. I think you are right at least you could explain what was happening to her when they are young they are pretty adaptable.

[LauraK]

Hi everyone,

Nicole - I'm sorry to hear that you did not get the news you were hoping for. We know exactly what you are going through. As you say hopefully things will be a little easier if you can reason with Scarlett and explain things to her. Fingers crossed that keeping the brace on helps things over the next 6 months.

We have just received Harrisons appointment to discuss his surgery. It's the 29th August so we are trying not to think about things until then. We've got so many questions and we are trying to guess the answers really and there is no point until we can find out the answers for definite. We are also trying to arrange his christening before he has his op, just don't want him to look back at the photos and see himself in a cast and we also want him to be happy on comfortable on his special day.

Hope everyone else is well, I will let you know when we know more.

Take care everyone xx

[Livs Mum]

Hi Everyone
Shortly after my daughter Olivia started walking, I noticed she was tip toeing on her right side. She was 13 months old and both myself and my partner became concerned. We went to the doctors where Olivia was examined and were assured that her legs, feet and her hips were fine and that toe walking was common. Still not 100% certain we went to another doctor who checked Olivia and were told exactly the same thing. No x-rays were done as to their knowledge their didn't appear to be any problems. Still not sure we asked for a referal to a specialist. We had to wait a month or so but eventually got to see a specialist at the Childrens hospital, who at first glance ordered an x-ray.
To our disbelief the x-ray showed that Olivia Had Bilateral hip displaysia and that surgery was needed immediately to correct her right hip, six weeks in a hip spica and then all over again with the left. Then a Dennis Browne brace will have to be worn by Olivia for 12 months 23 hours a day. I can't believe it went undetected for so long. Olivia is 18 months old and her
first surgery is on the 18th Sept, we'd just like anyone that has gone through the same thing to be able to provide any inside info, tips to help our daughter, help us guide her through this difficult time. Thanks lucy

[nicoli]

Hi mis tree(?) - was your son was diagnosed at birth? You are very lucky that the pavlik harness did the trick. My daughter Scarlett was in a pavlik harness from 3 - 5 months old and it corrected her hip socket, but she is still in a Dennis Brown brace as her ligaments are still not holding her hip in the correct position after 9 months. Scarlett experienced the same thing with her legs after coming out the harness/brace full time. He legs were like jelly and she would not put any weight on them for a little while. She eventually started pushing off things and they got stronger quite quickly. Good luck with everything.

Hi Lucy - I am so sorry to hear about your story. It is so upsetting that you had to wait so long to get the right answer. Lucky you were persistent or Olivia would still not have been diagnosed. Our daughter's hip dysplasia was picked up at 3 months by our community nurse who noticed her skin fold were not even at the back of her legs. Even though we are still going through treatment I am eternally grateful to her for picking it up when she did. All the other doctors and pediatricians had missed it. You may have read that we have been told to prepare for surgery when Scarlett is about 4yo (she's now almost 13 months) so I am now in a bit of a state of limbo until then. Scarlett has been in the DB brace for almost 8 months now (after spending 2 months in a pavlivk harness), but has only had to wear it at night for the last 5.5 months. I am sure you will get lots of info here from others who have gone through surgery. Good luck for the 18th. You will know from reading everyone's stories here how resilient these kids are.

Take care everyone

Nicole

[JTSPELLMAN]

Hi ladies,

My name is Jennifer and I'm writing from NY. Though a million miles away, I too have experienced hip dysplasia both personally when I was born, and now with my daughter Emma. She unfortunately got my "bad gene" and was diagnosed at 4 months with a left dislocated hip. She is currently therapy free at 10 months and for that I am beyond thankful. I wanted to share the company I started with you when I lost my mind trying to find stretchy accomodating clothing for her when she was in her harness. I just launched the site on July 4th, 2008. This is my proudest achievement since Emma. The feedback I have gotten has been overwhelming from the community. A lot of woman say they wished this was an option when their babies were diagnosed and I wish it was too when Emma was diagnosed! The clothes can be used for harness wearing babies, but I have also gotten feedback the 'Hip'py Onesie works for the spica babies too! I am always looking for improvements and ways I can make the clothing (and soon bath!) situation better. I pulled my hair out trying to find cothes for Emma when she was diagnosed that wouldn't be binding and make the situation worse... I hope it helps a few of you and at the very least please know I am living proof at 36 that hip dysplasia can be overcome with zero side effects- and that comes from a woman who at 1 year old wore a brace for 1 year straight 24/7 and then 8 hours a day for another year! Good luck to all.