Hip Dysplaysia Support Group

[Alexandra's Mum]

Hello All, I have been reading your stories on your little ones DDH in the past few months and was sad to hear about everyone' difficulties, it has been heartbreaking.
My little girl was diagnosed with a clicky hip at a few days old and we had our fist ultrasound at 6 weeks old with another 2 follow up ultrasounds. After the second ultra sound the pediatrician said she was very happy with the progress but we will do another ultrasound in 6 weeks to be 100% sure.
After this ultrasound we were told she would have to go into a brace, which she did quite quickly. At 5 months old she was in the DB bar. She wore this for almost 7 weeks. On Tuesday we went back to RCH for first check up, were told to continue on and we would receive a phone call to advise if we can have the brace off for bath time which up until know we could only sponge bath. We received a call the next afternoon and were advised that the brace was not working for her and she will need surgery and to take the brace off until then. We will be seeing a surgeon in the next few weeks to further discuss and do another x-ray etc.. I am not sure were we go from here, even though they have explained it to us (on the phone) i feel like i am in the dark and in has been sprung on us quite suddenly. I am in shock and very upset.
Am hoping someone can shed some light. Going by some of the stories i have read it seems that this is going to be a very long process for our baby, and I feel like she is being deprived of a normal childhood.
I know i should not feel this way as this is not the end of the world and she will be fine in the long run. We seem to have been dealing with this issue from the day she was born almost and it has only been getting worse for her until now. I am not looking forward to her being uncomfortable and in pain after the surgery.
I am so sorry to babble on like this.

[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

[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

[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.