Hip Dysplaysia Support Group

[Miss.September]

We've just had to have our Safe and Sound carseat altered to fit our daughter who is now in a spica. We went to the Royal Children's Hospital Equipment Department and got an extension strap to reach around her middle. Then we pad the seat with blankets so she is actually sitting on the seat, instead of inside it. She's still secure, it just looks really awkward, but that's what our surgeon told us to get. The staff at the RCH (Melbourne) came out to the car to see what was needed and then helped my husband install it.

Hope it all gets easier for you,

Corelly

[nicoli]

Hi all

Just wanted to let you know that baby Xavier Marcus arrived safely on 4 August weighing 3.42kg and 51cm long. Scarlett is adjusting to having a little brother and everyone is happy and healthy.

No sign of hip problems on first inspection but we will have a scan at 6 weeks to make sure.

Hope everyone is well.

Nicole

[Jaffaz]

Hi All

Just wondering if anyone has had a toddler (2.5yo) in a hip spica or brace? My son was diagnosed at 5 months, then had open surgery at 6month followed by 6weeks in a hip spica and 6 months in a brace. He has been brace free for almost 18 months now and is a very active little boy. However we have know from the day of his first surgery that he does have "quite a funny left hip" in the surgeons words. We are due to go in for an xray the first week of September and have been given a 60% chance he will require further surgery, followed by time in the spica and cast. We have done it before but he was much smaller then and easier to entertain, so I am very concerned about the possibility of him being so restricted.

I really want to be prepared so that if he does need to go for round 2 then we have a plan and some idea of how to manage it and keep him happy. I pray that the xray turns out to be ok. Any advice/info would be much appreciated, I think I just need to hear that it can be done.

Many Thanks
Elisa

[Alexia'sMum]

Hi everyone... i'm so glad i found this site!!

I've got a beautiful little 11 week old, Alexia, who was born via ceasar due to being breech... she had clicky hips and was booked in to see the hip dyslasia ppl just before she was 7 weeks.

She went straight into the harness after her ultrasound and after 4 weeks there was no improvement so they fitted her for the hip abduction brace which went on friday afternoon

she was so distressed to be in it, crying much more than normal and much more than i expected after the couple of days it took to get used to the harness

by saturday i saw that she had sores developing on both her legs and was still crying and whimpering so i ranf the nurse to say i was going to take it off as it was rediculous to put her through this... i took it off and she stopped crying immediately... and i could see that her legs were almost cut and very weepy like squished blisters.... she seemed fine though with panadol and bepanthan on them but i was worried they were infected and panicked about the bloody brace going back on

took her to dr on sunday and yes they were infected so is on antibiotics - he suggested not putting it back on until the sores have healed

saw the hip nurse and orthotist today and they want it back on asap... the nurse tried to say it wasn't that bad and happens to about 1 in 10 babies who go into the brace, but the orthotist came in and was like 'ooh that's the worst i've seen, very unusual to be on both legs' and they took pics to show the surgeon and made an app for thursday morning for us to go back.... they said they're going to adjust the brace and get stockings to minimise the rubbing but i'm worried that the rubbing on a wound will make it worse and want it healed properly before going back monday or so to start the process again...

has anyone else had this problem??

has anyone else dealt with these pressure sores? please tell me there's no sores the whole 3-6 months the brace is on!

and for those who've used the brace, did u end up having surgery or did the brace actually fix it? i'm concerned that since the harness did nothing we're heading for surgery and the dr's are just wasting time on this, aaagh it's all so confusing

sorry for my novel but thanks in advance for any replies!

[z-lu]

Hi everyone
Hopefully I'm posting to the correct spot this time! Thanks to everyone who replied to my previous message.

My baby girl Zara is 17.5 months; she has been in a hip spica since 8/7/09. Her clicky hip was never picked up until she started walking (with a limp). With a bit of luck she will be going into a dennis browne brace on 11/9/09 - if the surgeons don't think her socket has developed enough she will be back in a hip spica for another 8-12 weeks.

Zara has been mobile since day 5 of the spica - she drags herself around all over the house. She can now lift her entire body off the ground; she can also swing her legs in the air (one at a time) - which can be frightening to watch! Since she's been in the spica food has been a real issue - all she really wants is milk.

There has been a lot of emotional ups and downs but we have all accepted what has happened now.

If anybody has any size 1 or 2 pants for sale (new or second hand) please let me know - I would love to hear from you. Also, if you have any good seating tips for older spica babies please let me know - the car seat is our most major issue.

Good luck to everyone!

[wysiwyg]

Hi, my little girl has been in a Denis Browne brace for five weeks and on Monday we got the great news that her left hip has gone from severe to mild/moderate so we are now allowed to take it off for baths. We rushed straight home to have a bath, 5 weeks of sponge baths which she screamed through was enough for me, and after the initial shock of going in the water again she loved it.

Alexia's mum - Sounds awful the sores on your daughters legs, a hip abduction brace sounds very similar to the Denis Browne brace my daughter is wearing (two cuffs round the legs and a bar across the back). She went straight into that at 7 weeks instead of the Pavlik because she was a pretty big baby and the opinion was is easier than the harness - and there was a significant improvement (see above) over the first five weeks - so perhaps a different type of brace will work better in correcting the hips for your daughter. We have had no problems with sores at all, was she wearing any stockings or covers under/over the brace initially? We always had little socks under the brace and then folded round it so the brace is never in contact with her skin directly. The hospital gave us one set of some stretchy stuff and the orthotist just said to cut up some old socks to use and change them daily. My old socks seemed to have lost all elasticity so I went to target and bought some cheap knee high socks and chopped them up - so she now has cool stripy looking cuffs!

So not sure if that helps, as we have had no experience with sores but thought the info might be useful.

[Miss.September]

Hi everyone!

Well the time has flown and the plaster is off!!!!

DD ended up with the spica on for five weeks - it came off a week earlier than expected, which was an absolute bonus. Her hip is now stable and she's in the brace which we can take off for bathtime. We have a follow up with the surgeon in six weeks. She's loving not having the spica on, it came off yesterday, and she's made the most of swinging her legs from knee down. I've certainly loved being able to hug her, and the lightness of her again!

I just wanted to write to everyone about to go through this or is in the middle of all of this. Please don't despair. It's awful and heavy, but once its off, you look back and go, wow, we dealt with all of that. I am so proud of my darling baby, who turns five months old tomorrow. I have a huge amount of respect for her patience and just her nature, she didn't let this bother her. I was petrified that she would revert into herself, but she did the opposite - I had the only shouting, laughing baby in the doctor's waiting room! She learned how to blow raspberries, she laughed when she was tickled and she always smiles at strangers, with bigger grins for those she recognises. And all of this started with the cast on.

So now, even though the brace is on for 23 out of 24 hours, I can't wait to see what it will be that she will learn next.

Anyone going through this - keep calm, get as much advice from people going through this as you can, and know that the end of it all will come qucker than you think.

Corelly xx

[Miss.September]

Just reading through the posts -

Alexia's Mum - how awful for you. My DD was so upset when the brace went on initially, she was three months old. We battled with the thin bandage stockings under the brace until the third week, when we were told to try socks. We got socks to fit a toddler with the shoe size of 2 and cut the toes off. Some thicker, fluffy socks might give her some relief.

Hang in there, our babies are so very brave.

Corelly x

[bertie]

Hi Everyone,

Corelly - congratulations to you and DD for getting the Spica off - I am so happy for you both and totally understand how you must be feeling! What is the brace like that DD is in now?

Z-lu - I laughed reading about your daughter Zara moving around so much - my daughter is crawling around madly in her spica, which is also funny to watch. It's kind of a cross between commando and normal crawling - obviously she can't move her hips or knees, but she kind of wiggles her bottom half from side to side (god knows how!) to get some extra momentum as she moves along!!

Alexia's mum - hope Alexia's sores are getting better - how awful! As if being in a cast or brace wasn't bad enough... I hope the drs are able to suggest some way of protecting her skin...

Well, we are just over 2 weeks away from getting Olivia's cast off, and I really can't wait! I can't believe we will soon see her little body, especially her tummy and legs - I have almost forgotten what she looks like without the cast on!

Our surgeon was happy with progress when we had the cast changed - said her hip felt stable and the MRI looked good. Now hoping for some good bone growth between then and when the cast comes off. He said she won't be in a brace during the day, but may need a brace overnight.

Corelly (or anyone else) - what was DD like when the cast came off? Was she frightened by the saw? What were her legs like immediately afterwards - was she able to straighten them out normally straightaway? Or does it take some time before her legs get back to normal position? I guess she is in the brace still, so she probably still has her legs in the frog position...

Bertie xx

[Miss.September]

Hi Bertie,

Only two weeks to go! You must be counting the hours!

To get the spica off, DD went back into the operating theatre and it all happened in there while she slept. She didn't need a general - she went to sleep with gas.

The brace she is in now is a Rhino Crusier - it's plastic and foam, going around the top of her legs and around her belly, all held together by velcro. She isn't fazed by it at all. After the spica came off, her skin was incredibly dry and flaky, but I just rub moisturiser in at each nappy change and its quickly coming good. The flakyness was gone after a couple of goes, its just a little dry now. She was a little unsure when we did the first nappy change, her legs were suddenly free! This morning, though, she stretched out those little legs - it was great to see. It might be different for Olivia though, being in the cast for longer. DD had the original brace on for four weeks, then a week of free legs, then five weeks in the cast, so she hasn't had too much trouble with movement.

Every day is one day closer to the brace being gone for good!!

Corelly x

[bertie]

Hi All,

Thanks Corelly for letting me know a little of what to expect when Olivia's cast comes off - a week on Wednesday!

I thought it was next Monday, but got it wrong, so it's an extra two days

Anyway - we have booked a holiday - we're off to Fiji for a week on the Saturday - 3 days after she gets her cast off on the Wednesday - are we mad? Will she be uncomfortable from having her legs suddenly free still? I kind of imagine her just moving around as normal (at least as she is now - she is commando crawling around everywhere in her cast), and then gradually regaining the use of her legs over the following few days / weeks. Am I being a little optimistic here? Will Olivia find it really weird to have her legs free? Are we making a mistake going away so soon?

I felt the family really needed a break after the last few months, and this was the only week we would do workwise, I just thought we'd have close to a week between her getting the cast off and going away rather than just 3 days! I am not anticipating Olivia being in a brace during the day, although she may be in one overnight.

Sorry to ramble...

Bertie xx

[Annabelle's mum]

Hi,
I'm new to this forum. My story is that i have a 10 week old baby girl who was diagnosed with bilateral hip dysplasia when she was 3 days old. I was told it was a severe case on both sides with one side being the far end of severe as the hip socket was not formed at all. It was completely flat.

The day she was diagnosed i cried for at least 6 hours straight. I had dreadful visions of her and only thought the worst long term outcomes. I thought of all of the dreams i had of holding her and cuddling her and bathing her that would no longer happen.

The evening she was diagnosed she went into a pavlick harness for 6 weeks. It was not what i had envisaged, in fact it really was not too much of a bother at all. the saddest bit was that we could not bathe her as she had to stay in it 24/7 and she couldn't wear some of the clothes she had been bought. I was told that the outcome of the harness was extremely good - 90% success rate.

At week 6 she had an ultrasound and there was no improvement. She was one of the 10%. The harness was removed and she was fitted for a Dennis - Browne brace. At the time this seemed so much worse but there were a few positives. I could see her feet and toes and the top part of her body was not covered. Cuddles seemed closer.

She is 10 weeks old and we have just had the next ultrasound. Unfortunately there is no improvement and her operation has been booked for the 24th sept. She will go in a Spica Cast for 6 weeks then depending on if it is closed or open surgery she will go in various braces. It just breaks my heart that my happy adorable baby will be in the cast from waist to toes. The positive is that for the next 10 days she is brace free and loving her baths already.

Sorry for the novel but i thought this was the best way to introduce myself. My next step is determining how to look after her in a cast. i have already gone back to work part time which makes things a little more difficult but on a positive note i work for an incontinence company so at least i can experiment on what the best product is to use under the nappy.

Sara

[bertie]

Hi Sara,

Sorry to hear about your little girl. On the plus side, she has been diagnosed really early, and she really won't remember at all being in all these braces and casts.

We are just at the end of 12 weeks of spica cast for my daughter (now 14 months). I was devastated when we found out - thought all the things you are thinking now, and even more so because she was so active before going into the cast - crawling and starting to pull herself up.

Anyway - I have been absolutely amazed at how well she has tolerated the cast. It took her a few days to get used to it, but since then it has not bothered her at all. In fact, she is crawling around now in her cast almost as well as she was before - she does a pretty agile commando crawl heaving her heavy cast around - it amazes me.

So - I guess my message is... it's, yes it's a bummer - a total bummer, but so worth it to get her all better at the end (we hope!). BUT - it is far worse for you than it is for her - remember that. Especially as your little girl isn't moving around much, so she won't notice not being able to do things.

Best of luck with it all - and do post here with any questions - it has been really great for me having support from people who have been through it all before.

Bertie x

PS - very lucky you are working for an incontinence company - we have found incontinence pads slipped inside her cast with a nappy on top to the the best, anbd we've had absolutely NO leaks. They are darn expensive though!!

[Annabelle's mum]

Thanks Bertie,

I appreciate your reply. To be honest i have felt a little alone in this journey. I think this support group is just what i need, just to know there's someone i can turn to that understands. My husband is great although i am the one that keeps life ticking along smoothly for us so i will naturally be the one that needs to figure out what products and how to keep it going smoothly with our upcoming challenge.

I know that i should be really thankful that it was diagnosed early, especially as the surgeon says that if she was checked now it would not be picked up as her hips "feel" normal when a manual check is done. I can only imagine how hard it must be with an older baby that has already started to crawl.

Thanks again and good luck with the cast removal, you must be so excited.

Kind Regards,
Sara
x

[nicoli]

Hi all

I haven't been on here for a while as I've been busy with 6 week old Xavier (and Scarlett).

Sara - I am sorry to hear your story. I think every mum who has posted to this forum knows exactly how you feel at the moment. I have foun this forum such a comfort. Just knowing that there are others experiencing the same thing really helps. Other people tell you that you are lucky if it was oicked up early etc but all you can think about is the loss of what you had hoped for your daughter. My daughter Scarlett (now 2) was in a pavlik harness from 3.5 months then a dennis brown brace up until she was 6 months, then she wore it at night only until she was 22 months. She is now brace free but we need to have annual checks and she may still need an operation before she is school age. I can't imagine having a baby in a cast but as I'm sure you've read - plenty of people have done it and survived. I'm sure the time will fly by.

We go to have Xavier's hip ultrasound next week to check that he has no problems. Fingers crossed.

Nicole

[Annabelle's mum]

Hi Nicole,

Thanks for your support. i received the details today for her surgery and thankfully they advised that she is booked in to have the cast off on the 11th Nov. i know more plaster may have to go on after that as the surgeon mentioned potentially a broomstick plaster going on but right now i'll focus on the body cast coming off on the 11th.

All the best for Xavier's ultrasound next week, i'll be thinking of you

sara
x

[wysiwyg]

Hope everyone else's bubs are doing fine.

We went for our second ultrasound on Friday and too my amazement they said the hips have improved so much can start weaning DD off the Denis Browne brace, so she is now down to wearing it 15 hours per 24 (so for overnight and day sleeps). I was so surprised as she has only been in it from week 7 to week 17 and her left hip was considered severe and I was expecting at least another 6 weeks in it full time.

Is so great to have it off, and see her able to lay flat without he legs suspended in the air, her legs still flop out in the same position as were in, in the brace but she is starting to move her feet up towards her face which she couldn't do before. Hopefully she will roll soon and start to bear weight on her legs more (they said this would be good for the joint).

She feels like a different baby to carry though and need to be a bit more careful I think as is so much more wriggly, and changing the nappies I still forget sometimes that don't have to slide it through the back of the brace. When she is wearing the brace I can put it on over her clothes now which makes it easier.

We are flying to UK on Saturday - I am intending to keep the brace on for the flight (over clothes so can see it when go through x-ray) was wondering if anyone has any experience with DB brace and flying whether there is any swelling of the legs on plane etc?

[Annabelle's mum]

Hi Nicole,

How did you go with Xavier's ultrasound? Annabelle had her surgery which ended up being open and now she's in her cast for 7 weeks. the poor thing. Thankfully i had researched thoroughly so i knew what to expect but her dad hadn't and he was so shocked and really upset.

For anyone that is about to go what we went through here are some tips:
1. Go to Royal Childrens Hospital prior and organise the extension strap that you will need for your car seat. Bring the car seat with you as there are two variations.
2. Tena Goodnights are a much better option than the newborn nappies for inside the cast. Your baby can wear them all through the night without leakage (no. 1's).
3. If you use the right product on the inside you can use a product like Tena fix on the outside. It is made to hold the pad in place. My 12 week old wore an ex-small but could have gotten away with a small.
4. Purchase a bean bag for when you are at home and have a spare doona on hand to bundle up for your baby to lie on.
5. Determine how you will need to adjust your pram to fit the baby and cast in. you may need extension straps for that too.
6. Whilst you're in hospital don't wait for the nurses to come to change your baby's nappy. You take control and ensure it is done every 3 hours at first.
7. Bring with you to the hospital vests that do not fasten underneath and long sleeve tops.
8. Free up your time. Your baby will need your attention, love and care 100% of the time.
9. Prepare yourself with support as looking after a baby in a body cast is exhausting.
10. Hold your baby close as many times as you can before the operation.

I can't wait for Annabelle's cast to come off so that i can hold her close again.
Now it's 7 weeks of waiting, hoping and praying that her hip forms correctly. fingers crossed.

sara