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Hi Bertie,
I think I will go in with Ella, I know it will be hard but I think it is also very quick for them. My husband will be with our older daughter as we have to take her with us, i think both parents are allowed in recovery. Just remember that they are in good hands and this is the begining of their future.
Good luck, will check in on our return from Westmead.
Caroline
Hi Bertie and cjoe. I just wanted to let you know that I am thinking of you and whishing you all the best with the ops. Let us know how it all goes.
And Happy birthday to little Olivia (what a beautiful name!). Hope she has a great party.
Melissa x o
Hey Caroline - how did everything go? I have just written a long post in the other Hip Dysplasia thread, which I won't repeat (it was a thesis!), but basically we are doing ok, other than poor Olivia has had a nasty throat infection over the last few days (probably coming on before the cast, and got worse afterwards), so this has been worse for us and Olivia than the cast itself.
Olivia is sleeping really well, but is not so good when she is awake - just wants to be held all the time, which is knackering as she is so heavy now. Am hoping she will get better about being sat on the beanbag etc over the next few days...
Let us know how you got on - I hope Ella is doing ok.
Bertie x
Hi all,
I have posted in the other thread but thought I would say hi in this one too.
Caroline - my son was diagnosed with HD at 18 months. We noticed at 16mths (Nov08) when he started walking that he walked with a limp, so off to the GP then Paed (Dec08)then PMH in Perth (Mar09) - we had to wait 3 mths because of the xmas break aparently. (we live 5hrs from Perth)
Anyhoo by the time it was March, Hudson was 22mths old!!! We were told it was surgery and a cast then a brace. Hudson had surgery but all they only needed to 'nick' the tendons to move the hip into place. Hudson is now at week 13 with a cast. We just had a new one put on yesterday, this one is only on for 2wks while they make the brace. We've been told that if the hip socket doesn't deepen after the brace then they will perform the procedure that your little one has to do now.
Hudson has been really good and adjusted fine to the cast. He does wear through it at the knees everytime though - as he drags himself around. Hudson attends child care as we both work (my DP did take the first 7wks off though) the day care a cool about it. I have just requested that he not go in the sandpit but I'm fine for him to go outside.
The challenges we have faced are the highchair issue. The first cast didn't fit, the second one did and now this third one doesn't fit again. I just cross my fingers that the brace will!!!
Feel free to ask anything you need... just relax and go with it really, kids are resillient (sp?) and will surprise you!
Lizy
my one year has been in her spica now for 3 and half weeks and wont sleep at night. do you have any ideas for help:
Hi hope this is the right spot for this. Had an ultrasound on my six week old DD yesterday and it confirmed she has got an issue with both her hips although left worse than right (I read at the beginning of this thread is more common with left - I wonder why?) - and will need to wear a harness (Pavlik harness?). I now need to wait for the doctor to get the results who will write me a referral - just wondering what the process is from here. Will I have to wait long to see someone, who do they refer you to?, how long will it be before she is the harness am hoping is quick as seems the quicker the better?, do you need special clothes to wear with the harness? can you carry in a sling in the harness? can you use cloth nappies? how much is it likely to cost?
Is great to read about other babies who are doing well.
Hi I am sorry to hear that your dd has hip problems. Its good that she is picked up so early as it is much easier and quicker to treat. My DD1 was in a Pavlik Harness from 5 weeks old til 8 months old. I know that sounds a long time, but when I look back on it the first 12 or so weeks was full time, then it came off for 20 minutes a day for 6 weeks and the rest was at night time only. She was picked up at birth, she only had about 27% coverage, an audable clunk and her leg creases were not even.
We went through the hospital she was born at (monash clayton) as they had an orthopaedic outpatient clinic there. Being in camberwell you may be referred to your nearest big hospital or even the childrens. I know at my hospital the first harness was free but she needed 2 more sizes and they were $100 each. The physio sessions also were free. I guess it depends on where its getting done. the out patients was free to where we saw the specialist...it was bulk billed.
For clothes, I stuck to bonds wondersuits as they were stretchy and being winter its perfect fo wondersuits. Anything stretchy is good. I couldnt put jeans on DD1 as it pulled the harness in. You can use cloth, we used it for a while but dh found it too hard, so we switched to sposies. Just got to be carefull not to get it wet coz if you cant take it off its hard to get dry when they are waring it. We used a hair dryer to dry it with a towel to pretect their skin.
As for the sling, I found it a bit hard, but you can give it a go.... I didnt use any carriers coz I was too scared to stuff her hips up. Make sure she gets plenty of tummy time or is propped on a pillow or bean bag as my dd got a really flat head from laying on her back all the time.
I hope that answers some of your questions. Just to let you know, as devistating as it is now, it will be fixed and my dd practically crawled soon after she got it off, and she was walking by the time she was 12 months. Shes now a healthy and very active 2 year old.
best wishes
Melissa
Ps...if you look at my photos on the link in my signature, you can see a few pics of Olivia in her harness
Melissa - thanks so much for your responses, and pointing out the photos it helps to see a photo of a baby in it.
I don't know the degree yet, the click seems to have been audible occasionally when the doctor has checked on two occasions and the leg creases look even so hopefully coverage is not too bad, just know the left is worse than the right. It is a bit frustrating at the moment because have to wait for my doctor to review the results and give me a referral when I know we do have to do something and the ultrasound guy said would be good if can see someone next week (the sooner the better and all that). I would feel so much happier if had an appointment for next week.
It was through the rountine 6wk ultrasound that my DD's hips were detected. She saw the orth surg the following week and on the same day as seeing him she was in the Pavlik Harness. Went we through the Childrens but saw Oth Surg as a private patient. His offices were near the Children's so the Children's fitted the harness and adjustments were done there. Because we went Private we paid for the harness (around $130 I think) but that also included all appointments for adjustments. DD only needed 1 harness but if she needed another one we would have paid the same again.
As for clothes we went up a size and just kept to items that we not restricted ie. didn't put press on the legs - romper suits were good.
i never used a carrier/sling just because I was too concerned it would put additional pressure on her hips. But that is something you could ask Orth Surg or person that fits the harness.
My DD was in harness full time for 12wks then weaned from harness from another month.
On a seperate all today we had DD2 hips checked today (she was also breech but would have got them ultrasounded anyway given DD1 history). Anyway her right hip is definitely ok, her left is borderline so they said to come back in 6wks for it to be checked again. They said there was about 50% coverage. They said if there hadn't been family history they would have said it was fine but coz DD1 they said they need to take the caution approach so while we don't have the all clear yet we are optimistic DD2 won't need a harness.
Hey Bridee we had dd2s hips checked too coz of the history and she had borderline coverage. Thankfully by 3 months she got the all clear and dint need a harness. All the best with it.
Hi All,
Sorry I havent been back on line for a while, Ella is finding the cast very difficult to adjust to. We have had some really bad days lately.
The operation went well, she had a Salter Osteotemy instead which means that we will have to go back in about 4 months to have the wires removed, but they have said that in the end this will give a better result. The operation lasted longer than expected, which was a worry.
Ella wants to be held all the time too, we are managing more down time each day and fortunately she fits into her high chair, so my hubby had made a play table that fits around her.
We have had many sleepless nights and I spend most nights on a camp bed next to her cot, we had to see our doctor for some night time sedation as I was not coping at all on 1 - 3 hrs sleep a night, Ella was waking continuously, we have now had a couple of good nights - only waking a couple of times so hopefully we will all feel better soon.
Ella is very frustrated during the day but with sleep we can cope with that, her 3 year old sister is managing to play with her - lots of threading games and sticking and pasting.
I have found that Ella will sit on the bean bag for short periods of time, we put the bean bag down with the pointy end forwards, (on its side) most of the beans to the large end and she manages to straddle the narrow end with her head supported by the large end - hope that makes sence.
I admire everyone who has to go through weeks and months of this, we are just trying to count down the days until the cast comes off.
Hope you are all managing much better than we are, I'm sure that with better night sleeps we will manage.
Take care,
Caroline
Caroline...big hugs. You sound like your doing it tough. I hope things get better soon for all of you. It is tough but there is an end to it. Thats lovely that your husband made her a play table. How resourceful. She just sounds uncomfy. Anyway I just wanted to give you hugs....
Hi all
wysiwyg - I am sorry to hear about your daughter. It is the hardeest time waiting to find out what treatment she will need. Once you get started you won't have all that time to contemplate everything. Hopefully you get in to see the doc soon. My daughter Scarelett was diagnosed at 3 months after the community nurse notice uneven skin folds on her legs. She had no other signs prior to that and had been examined by several paeds and doctors. She was in a pavlik harness for 3 months full time and then a dennis brown brace for about a month full time before wearing it only at night until 2 months ago (she's almost 2). She was in the pavlik harness during summer so we had as little clothes on as possible. We used to slip onesies under the harness just to stop it rubbing on her skin. She took a little while to adjust but eventually got back to her happy little self.
Caroline - sorry to hear Ella is having such a hard time. It must be hard for you to watch her and especially with the lack of sleep. I hope she cheers up a bit for you soon.
We had Scarlett's 2 year check up on Tuesday and Dr Little said she had shown good improvement since her last visit (at 18 months) and he now only needs to see her every year. He didn't give us a 100% guarantee that she wouldn't need an op, but said we would wait until she's 5 to decide. For some reason her hip has just been very slow to recover on it's own.
Bub is due in 2 weeks so I am sure I will have my hands full for a while after that. I've been told to have him screened at 6 weeks so I'll be sure to let you all know how that goes.
Best of luck to everyone
Nicole
Oh Nic...good to hear from you. All the best with your birth and looking forward tohearing your little man has arrived safely:)
Hi,
Thanks for all the info.
We had our appointment and got a Dennis Browne brace fitted on Monday morning - so appointment came through really quick. Her right hip was borderline, but her left hip the joint was very shallow and the ball actually could slide in and out of the socket without a click or clunk - so we were quite lucky that the right hip clicked or it might not have been caught so early. CJ was quite miserable the first day screaming everytime she tried to kick her legs as normal and couldn't, second day was much better (first two nights were quite sleepless) and now seems back to her normal self. The nappy changes are quite a challenge but seem to have mastered it now, I need to put her on her front to feed the nappy through the back so she is getting plenty of tummy time now. They made the bar quite rounded so could continue using the cloth pocket nappies, some styles work better than others, the bumgenius are good, green kids as are more bulky are trickier to get on but otherwise work fine. When got the brace fitted, the lady said CJ was one of the most difficult babies she had, had to fit as kept fighting it, but yesterday when went for checkup and they took it off went back on really easy so she is obviously used to it, and that made me feel better as hopefully in six weeks we will be able to take it off to give her a bath.
At the moment we have a safe and sound capsule on hire from the council, but her knees touch the sides already (she is a big baby) so need to investigate getting a different car seat - anyone any advice on what models are good or bad for babies in harness or brace?
They said the sling was fine as long as both comfy, and tried on tuesday and the hugabub has the legs in a similar position to the brace anyway. I don't think would work forward facing though, as the bar on the brace would prob be too uncomfy digging into me, but she is too young for forward facing anyway.
Nicole - best of luck with new bub, and hope the scan at six weeks is all clear. My understanding is that I will now have to have any future bubs scanned?
Thats great that it was actually picked up early bcause it would have been a longer process if it was found later. Sounds like she is managing well and that you are also doing well. Good that shes getting some tummy time too. As Olivia had the pavlik we put her in a safe and sound compaq and she was ok but the pavlik doesnt have a bar. Maybe you could ring the place that you got the harness fitted. Good luck with it all.
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
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
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
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!
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!
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.
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
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
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
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
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:doh:
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
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
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!!
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
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
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 :pray:
sara
x
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?
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
Wow sara, thats really great of you to pop that stuff down for people to read. Good luck for the next 7 weeks.
wysiwyg...thats great news. I remember when we could take olivias harness off and she would be frog legged with out it on. After she had it completely off it took about a month for her to keep her legs straight. Its hard to readjust to a baby without a harness. I think for me it was the fact that when Olivia got the harness off, she had to learn how to sleep with the freedom of her cot...she was able to roll and get stuck and move out of her covers. It took months for her to adjust to that...lots of sleepless nights!
Well its been so long since all that has happened, although it only feels like yesterday. Olivia is now a very active 2.5 year old and you wouldnt know she had anything wrong with her hips
Take care
Hi everyone
wysiwyg - good to hear that DD is now improving so much after wearing the dennis brown brace. It is so wonderful to see their little bodies again after having a harness/brace/cast on for so long isn't it? I'm sure that her legs will come in eventually although I must say that even to this day Scarlett is very flexible and often spreads her legs out to the sides when lying on the floor.
Sara - it's great to hear that you were so prepared for what was going to happen. I think the more ready you are the easier it is for you to be there for your daughter. I hope the next 7 weeks go by quickly.
About our little man - we had his ultrasound last week but only saw the paed today. The ultrasound was a nightmare. He pretty much screamed for half an hour while having it done. The woman doing it was a real cow. She was nasty to me from the moment I got in there and decided she hated me when I rejected her suggestion of putting sugar syrup on Xavier's dummy to calm him down. Oh well back to the results - the paed said that he has stage 1 (borderline) DDH but thinks that he will grow out of it. He has ordered another ultrasound in 6 weeks to check his progress so I'll keep my fingers crossed. I didn't ask the sonographer what the ultrasound looked like while she was doing it (because she was so nasty) but I saw the percentages were between 50 - 60% when she was capturing the images. I remember Scarlett's good hip was about that, but her bad hip was 17% so I thought his results were pretty good.
I hope everyone else and their bubs are doing well.
Nicole
Hey Nic, good to hear from you. Rebeccas were borderline as well and she had u/s until 5 months old, then xray. They just grew on there own. I am sure it will be fine. Sounds like the lady was a cow....dont you hate that.
Hi everybody,
I just wanted to say a quick hello to you all and thank you for telling your stories. They have helped me a lot in the lead up to DD2 going into her pavlik harness. Especially important has been seeing the start of people's posts and their progress.
The day after DD2 was born the ped noted that her hips felt a bit loose. Fast forward to DD2's 6 week check-up and the hips hadn't come right. Immediately I feared the worse but with a bit of research - and reading all of the threads - I found out that the treatment was not quite as bad as I feared, our children cope much better than we do and found early that these things are very fixable.
The tips on what questions to ask at the ultrasound appointment - posted a while ago - were very useful. I was able to ask the right questions and had a pretty good idea about what to expect in terms of DD2's treatment. DD2's right hip is right on the line and the left hip is moderately dysfunctional (is that the right term?).
Still, the day DD2 went into the harness was a bit of a blur and I had a little freak out. We have had the brace on for two weeks now and hope that it will only be on for another 10 weeks. We will see how it goes. I don't want to pin my hopes on a specific date as I know it doesn't always work as quickly as hoped and I don't want to be disappointed.
Anyway, that is us. Hope everyone is doing well.
crosswig - Hope all goes well, not having a set date is a good idea, they didn't really give us any indication of how long, just an average case scenario which meant that when we went last Friday and after only 10 weeks in a DB brace and they said we could reduce it down to only for DD's sleeping time we were really surprised and so pleased.
Hey crosswig, glad you found some useful things in here. Its good to not have a time frame set in mind as it does seem to take a while for the hip to grow. In Olivias case, every time we had a specialist review, i always would psych myself up and think, this would be it....then we would always get...see you in 6 weeks. Olivia was in hers (Pavlik) for 6 and a half months. It felt like forever. I remember though the last few months were only night time....good luck with it all.
Melissa