Hip Dysplasia

Hi Bertie,

Thought I'd give my 2c as well...

Going under - Hudson has been under 4 times now (one for an unrelated problem) each time he goes under differently. One time he fought it and it was horrible, the last time he just layed on the bed with the mask on and went straight to sleep... I go everytime as hubby doesn't want to. Just be prepared, typically they will usually squirm as they start to go under apparently but as everyone else has said all babies are different - just be strong and comforting, if they see you stressing that will only make things worse. When Hudson has gone completely under he makes a rasping sound as he breathes - this has only been the last 2 times but freaked me out a bit, the nurses reassured me that this was normal though.

Nappies - Hudson always comes out after having a cast put on with a large nappy on the outside and padding on the inside. The first time we took a small pack of nappies a size bigger than he would normally wear and a small pack of newborn nappies. This works well, although he just about always leaks during the night but this is because we don't wake to change him, it hasn't been really bad though and he doesn't smell as bad with this second cast as it is colder now - the first one was put on in March so the summer didn't do us anyfavours in the smell department.

Good luck on Monday Bertie - we will be thinking of you.

We go to PMH on Wednesday so Hudson can be fitted for his brace - he will go into another cast for a few weeks while it is being made then go into his brace. Not sure how long or if he's aloud to take it off or even if he can wear clothes under it... anyone had a brace fitted to a 2yr old or similar??

Thanks everyone...

Last night of freedom tonight - I am going to give her a really good bath.
I am dreading tomorrow, but to be honest Olivia is in an awful mood at the moment, with or without cast - I think it's teeth (she has at least 2 coming through), and all she does is cry unless one of us is holding her. I keep thinking, if she thinks life is bad now...! I'm a bit worried about how we are going to comfort her after tomorrow if we can't give her proper cuddles, esp as she'll be so much heavier we just won't be able to walk around holding her all the time, which is pretty much what she is demanding right now!! I hope the teeth get sorted out soon, as otherwise the next 12 weeks are going to be a total nightmare. We have tried everything - panadol, bonjela etc etc, but she's basically completely miserable unless she's asleep. She's even off her food - won't be much of a problem fasting her tonight and tomorrow morning!!

Anyway, I will let you know how everything goes tomorrow. Thanks for your thoughts.

Bertie x

Hello all,

Well, we are 3 days in and slowly adjusting... Olivia had been really grumpy with a cold and teeth over the weekend, so I asked for her to be assessed before being admitted - they listened to her chest and checked her temp, and pronounced her fit for surgery. I was very relieved, as I really wanted to get the whole thing done with... So, the procedure went well - her hip is now sitting nicely where it's meant to be and we just have to wait for nature to take it's course.

She was very grumpy for the rest of the day - whinge crying rather than full on crying, but really I thought it was because she was over tired and hungry than anything else - she had been awake since 5.50am, fasted from the night before, and didn't sleep before surgery at 10am (she normally has a long morning sleep still). She did actually fall asleep briefly on the bed in the 'holding area' before anasthetic. I did go in with her for the anasthetic - it was awful as she was jerked awake from her little sleep and then proceeded to thrash around and I had to hold her arms down.

Anyway, she didn't really sleep afterwards for the rest of the day - she didn't seem that bothered by the cast itself, just couldn't sleep and everytime she closed her eyes she'd jerk awake because we moved (we had to hold her all day - she refused to be put down in the cot), or because we walked past a light, or the nurses wanted to take her temp etc.

Slept really well that night, but was REALLY miserable the next day - I felt that there was something bothering her other than the cast and I was really worried she wasn't eating / drinking anything, so took her to the doc - sure enough she has a bad throat infection and he put her on antibiotics - poor little thing - teeth, cold, throat AND a spica cast!! No wonder she was so miserable. Not sure if she should have had the surgery afterall...

So about the only thing she's been happy to do in the last few days is sleep (which she has done a lot of). THe antibiotics have kicked in now, and she seems a little bit happier today - tolerated being sat on the beanbag for about 5 mins. It has been exhausting, as when she is awake she basically has had to be held otherwise she just cries. She is ok in the car or the pram though.

Nappies aren't as bad as I was expecting - we are using one size up on the outside (which rarely need to be changed as they don't tend to get leaked on) and an incontinence pad on the inside - hospital suggested this, and it seems to work really well as it fills pretty much the whole gap in her cast. We are getting through a lot of them though, and they are really pricey!

To be honest, I don't think she has really noticed the cast that much yet - she has been far more bothered by her throat. I can tell she's getting a little bit frustrated today though, now that she is feeling better.

Anyway, sorry to have written a thesis! I'm feeling better now too, now that we have started the process and I can start counting down the days - 81 to go!! We are due to have cast change on 3 August.

Bertie x

Hi Bertie,

I was happy to read that you and Olivia are doing ok since Monday's operation...it truly must be so hard to see your child go thru it all, I cannot even imagine. My bub has had a Dennis Browne brace fitted for 3 days now (instead of the pavlik harness) and it tears at my heart watching her get used to the new 'feeling' of the brace...let alone going thru surgery! All the very best and fingers crossed Olivia's hip responds well.

Natalie

Hi everyone,

We just got the 3rd cast on yesterday. This one is only up both legs to the top of his thighs (no belly bit) but still with the bar in between. Was good to be able to clean his back and bum which had alot of dried skin (and poo we think) stuck to him - unfortunately there are some things that are just going to happen and only so far you can reach :)

Bertie - glad to hear things are going well, I hope little Olivia gets better soon though, must be hard with a cold... we've been lucky and missed the flu so far (DD school was closed with the swine flu 2wks ago but we never got it) touch wood :pray:
Hudson slept alot in the beginning, I think that their bodies go though quite alot so they need to recover a little. Will Olivia play on her tummy? Hudson was crawling around on his belly as soon as his drip was out... only bugger is he wears through his cast, but the sanity is worth it. We have also invested in his favorite DVDs - we never really let him watch TV before but have had to now just so we can keep him entertained as he does get bored.

Let me know how you go with your first yukky poo that goes all the way up and in the cast - priceless moments those :D

Lizy

Hi Lizy,

3rd cast!?! Is this 3 all together (ie one after another, part of the same treatment), or separate treatments? When we were in the hospital, the nurses kept asking us if this was our first spica - I was wondering, should we be expecting loads of spicas?!? I'm really hoping that, apart from the cast change midway through, we will only have to go through this once and that will be that, except for a brace for a while!! I'm not sure how optimistic that is??

Olivia is much happier today, now that her throat is better. She has been happy sitting on the beanbag playing with toys on a little table in front of her, and can also sit in her high chair (with a bit of adjustment) to eat etc. She is still wanting to sleep a lot though (I'm not complaining about that ;) ) She's not so enthusiastic on her tummy though, unless she is on one of us (i.e with one of us laying back on the sofa and her on her tummy on top).

I asked the physios in the hospital whether she would be able to commando crawl with the cast, as I had read about lots of babies doing so, and they looked really shocked and said they didn't think she would be able to and had never heard of that happening! We'll have to see if Olivia will give it a go, once she's settled into it a bit more - it might be too heavy for her.

No major leakages yet - we had a bit of poo leak out of the side of the nappy this morning (overnight), but it only went on the waterproof tape at the side, so I could wipe it off ok. We are using incontinence pads inside her nappy, and that seems to catch everything but the squishiest poos. She tends to have quite solid poo, so we'll just have to hope she doesn't get the runs!!!

Bertie x

She is going into childcare on Monday, so we'll see how that goes!

Lizy - sorry I've just read your post in the other thread and you previous posts, so i can see hudson's just had 2 cast changes rather than 3 separate casts...
Bertie x

Hi Bertie

I just read what you said about the physios, You should tell them that you chat with someone whos son has worn the knees through 3 casts from commando crawling... our Dr's and cast nurses will vouch for that!!!

How did you guys go with daycare??

I think they always refer to the spicas as a new cast even though it just a cast change - all three of our casts were slightly different from the last, The first cast was REALLY wide, the second not so wide and the third about as wide as the second one but without the waist bit.

Had to laugh on the weekend - Hudson was playing outside while I was mopping the floor... I went to find him as he was really quiet and he was sitting in the dirt digging and throwing sand!!!! I have no idea how he got in the garden bed let alone how he managed to sit up in it!! Was so funny though and I took pics... probably gonna have to explain that one to PMH tomorrow when we go to get the cast off. Oh well, at least he's happy I say!

So off we go to Perth and back tomorrow (5hrs each way) to have the cast removed and pick up his brace. The things we do for our babies.... Thursdays gonna hurt at work!!!
At least I get to bath Hudson tomorrow for the first time in 14weeks - looking forward to that!!!

hope all is going well with everyone - will post again after the trip tomorrow and let you know how the brace is.

Lizy

Hi Lizy, and all,

Glad to hear Hudson is doing so well - you must be so excited that his cast is coming off - can't wait to hear how that goes!

We are doing really well too - almost 3 weeks in, and Olivia couldn't be happier. She does get a bit frustrated at times not being able to move, (doesn't show any signs of commando crawling - I think it's just a bit heavy for her) but all in all does not seem at all bothered by the cast. So far we haven't had any problems with nappies or anything - the incontinence pads seem to be working perfectly and we have had no leakages (touch wood). In fact, this is one good thing - changing nappies is so much easier now that Olivia can't wriggle away!!!

Olivia has been at childcare for 2 weeks now (she just does 2 days per week), and it seems to be working out fine. They have been really good to her, and she loves the extra stimulation.

So we are all good! Can't wait for the cast to come off, and even for the cast change which will mean that we are at least half way, but as long as it's doing its job in the meantime, we are all happy.

Hope everyone else is also good...

Bertie x

Hi

My three month old was diagnosed with hip displacia at two months and has worn a leg brace for the past four weeks, only to find yesterday that it hasn't worked and she now needs surgery. I'm wondering if anyone has any stories to tell about babies who have been under a general for surgery at such a young age. She will be four months old at the time of the surgery.

Also, if anyone else has been through the plaster stage - she'll go into a cast for six weeks - how did you manage? I'm not sure what to do about clothes and breastfeeding! She was fairly distressed once the brace went on, she was freaked for a week, so I'm wondering how people have made their babies comfortable in those first few days. She too has lost her giggle that she was learning before the brace went on, which I'm finding one of the hardest things of all. Will all of this delay her development like sitting up and crawling? How did you manage the car seat and highchair? She's in a backwards facing car seat. After the plaster, she'll be in the brace again. At the moment, she's brace-free and kicking those legs like there's no tomorrow.

Sorry to bombard with all these questions, just hoping that people can share their experiences. Sorry if some of these questions have been answered too - am finding it a little difficult to concentrate :(

It sucks, but I know it's common. Poor little munchkin, but she's braver than me.

Thanks for reading this.

Corelly

Hi Corelly,

Sorry to hear about your daughter - it does seem amazingly common, but it doesn't make it any easier when it's your child! I was absolutely devastated when I found out that my 1 year old would have to be in a cast for 12 weeks (we are 3 weeks in), but, honestly, after the first couple of days, we all adjusted so well, esp Olivia, that I can't believe I was so upset about it. I think it was fear of the unknown that I found hardest - I had all the same questions you have, and more!!

To try and answer you questions...

Surgery - I found the hardest thing was going in with Olivia for the gen anaesthetic - it was pretty distressing watching her go to sleep and she really fought it. She wasn't nearly as unhappy as I thought when she came round though - I thought she'd be screaming, but she was just a bit grumpy.

Clothes - she wears normal body suits and tops, some of which need to be one size bigger than normal. I find some all in ones (the ones with legs and feet with poppers all the way down) fit, and some don't. For legs - trousers are no good, but I found some brilliant baby leg warmers that are working a treat and look fantastic too - search "baby legs" or "huggalugs" on the internet.

Breastfeeding - I'm afraid I haven't had this issue as Olivia is weaned, but someone gave me some advice earlier on in this forum, so try looking over past posts.

Development - Olivia was crawling and just starting to pull herself up to standing before the cast. Obviously she'll have 3 months setback, as she is unable to move now, but I have been told they catch up really quickly, and in a few months we won't know the difference between her and other little girls her age. Although it has been sad to see her not moving around, in my mind, a couple of months temporary development delay is worth it if she can grow up with a completely normal hip...

Olivia was pretty miserable the first couple days, but we found out that she was in fact suffering from tonsilitis on top of everything - I think she was far more bothered by that than the cast. Once the anti-biotics had sorted out her throat, she was back to her normal smiley self, and barely seems to notice the cast. She is sleeping really well, completely normally, and she is giggling more than ever before. In fact perhaps more so, as I find we are paying her more attention than before (she is our second child, so didn't get much of a look in before!!)

Carseat - fine with a bit of extra padding - the hospital physios will sort you out. Highchair - she may not fit in this. You can sit her on beanbags and in the pram though - again, the hospital will help you pad out your pram so it fits ok.

At the end of the day, remember it's just for 6 weeks. It is far more distressing for you than for your daughter, and she will not remember this whole experience at all. Most importantly, what I keep telling myself is that this is something that can be fixed and there could be something so much worse wrong with a baby - if this is the worst thing that happens to them, then they're doing ok I reckon!

Hope the above helps - please feel free to ask any questions at all - I had loads, all of which seemed really petty at the time, but I kept asking and I felt so much better prepared when the time came. Also do loads of searching on the internet - it is so much less of a shock if you've seen lots of pictures of babies in casts. By the time I saw Olivia, she looked so much less weird than I was afraid she might look!

I will stop writing this novel now!!!

Bertie

Thank you so much, Bertie, for taking the time to type it all out! It's one thing for a doctor to tell you the facts, but quite another to hear it from someone that has been through it or is going through it. I appreciate your response to all of my questions and hope that your bub will be fine at the end of all her treatment too.

Thanks again,

Corelly

Hi Corelly. Sorry to hear about your little girl. Big hugs hon xxx

My little Sophie was in a brace for 7 months from the age of 8 months old to 15 months. It was the age when she should have been crawling moving around etc. Like you said with your little girl - she lost her spark during the time and became such a serious little girl - but as far as the brace was concerned - she adjusted so well (better than us!) and towards the end learnt to bum shuffle around, stand up etc with the brace on. The O/Surgeon said to us when Sophie got the brace off that they take between 3 weeks to 12 weeks to catch up to their peers. Sophie took the full 12 weeks and she began to walk at 18 months old - but he was right - she was like any other little girl in the end! The hardest thing for Sophie was to learn to roll and then roll back again (which was a struggle at 1st esp. with her sleep) - but it only took 2 weeks for her to master. Sophie will soon be 3 (next month) and it seems so long ago that she had the brace on, it seems another life time altogether. But she's such an amazing little girl - she found her spark again :dance: She's such a funny fun little girl now and her favourite thing to do is DANCE especially wiggling those hips!!! She's such a joy and she's so full of love and care. I think they come out of it stronger with more character even if they're little babies.

It won't be long when you look back on this experience and think wow, did that really happen?! :D It is very shocking at the time, lonely and hard - I spent a lot of time crying in the beginning and the end when it was all over! I came out of the OS surgery a blubbering mess when he told me she was all better :rolleyes: This is such a great site to just speak how you feel and ask questions! I don't come on here much anymore but I love receiving the emails.

Big hugs again ...
love
Susan
xxxx

Thanks Susan for you reply. With each response, I feel more optimistic about the whole situation. I can't help but feel the whole "why is this happening to us" but, as Bertie said, there are so many bubs worse off, with such life threatening things happening to them.

We've had the brace off for two days now, and DD has slept solid both nights, this morning waking up laughing. I hope that we can just keep that laugh going, her spirits up and then we'll all be okay, I'm sure.

Thanks again, ladies, for your invaluable advice and support and will keep you posted on my munchkin's journey.

Corelly x

My now 6 year old didn't have a cast but was in a hip brace from 6month to 10.5 months, she actually learnt to roll in it, sit her slelf up and was quiet happy. After it came off she was crawling with in the month and standing by 13 months, took a bit longer to walk but was doing that at 14.5 months. Now you would not even know she had a hip problem as a baby, hers was both hips.

It is a hard thng to cope with as a parent but the kids adjust pretty well.

I don't know if this is still relevant to the way they do thing now days, but I was a child born with this hip condition and it is something that you have to keep an eye on later in life.

My hip problems resurfaced when I was a teenager as I was going through my growth spurts and I ended up having to have a couple of hip reconstructions to deeper my hip sockets. All is well now though and I am 28. I think my mum and dad must have gone through quite a lot with me as I was in the brace for two years! But it was all worth it as I can now walk perfectly.

I have also heard that I have an increased possibility of having children with this condition, but so far it hasn't been the case. I wish you all the best of luck with your children, it is a little uncomfortable at times, but in terms of problems with babies, it is definitely a manageable one.

Hi ladies!

Thanks for your stories. Alisha, can I ask how old you were when you were diagnosed?

Cheers,

Corelly

Hi all,

Well its been just over a week now since we did the trek to Perth, this time to pick up the brace.

We arrived a PMH and poor Hudson started crying as soon as we got the the ortho floor... I guess 2 wks ago was still fresh in his mind. He cried while the nurse sawed his cast off - she was great, no pussy footing around, just got straight into it and it was over within 10 mins.

We then went to orthotics to pick up the brace. Hudson was measured and fitted and we were out of there just after an hour total! So we headed back home as we were all keen to bath Hudson.

14 weeks without a bath took its toll on his poor skin, it was all scally and peeling... like really bad suburn peel but thicker. Didn't hurt Hudson at all though which was good. Poor guy hated his first few baths, he's ok now but still hangs on to the side of the bath as I guess he is unsure of his balance.

We are allowed to remove his brace for an hour a day (bathtime), he's been really good about putting it back on too - I thought we would have a fight on our hands every evening but Hudson even asks for his 'shoes' to be put back on.

The Brace - its two pieces of plastic molded around each leg with a metal bar between the knees to keep his legs splayed out. The plastic goes from half way up his cast to just above his ankles. The plastic wraps around the girth of his legs about 3/4 the way around. Velco wrapped around the top and bottom keeps it in place.

The only annoying thing is because Hudoson still dragges himself around on the floor he keeps wearing through the rivets holding the bar on to the plastic, we have had to get extra rivets sent up and replace them all the time... he wore through the first ones in only a couple of days!

We go back in 6 weeks (4.5 to go) to have x-rays etc done so we can see how Hudson is progresssing and hopefully get told he can have the brace off for longer... fingers crossed

Hope all is going well - glad to hear the new bubs are settling in to their braces/cast ok.

Hi everyone

My daughter's surgery has been brought forward and it's now tomorrow! Keep your fingers crossed for her! Will let you know how we go.


Corelly

Good luck Corelly - remember the next few days are the hardest, and things do get better! I found that I felt much better once the anticipation had become reality and I knew exactly what we were dealing with.

Let us know how you get on, but my thoughts are with you and your daughter

Bertie x

Hi All,

Tired! So tired!!

DD's op went well with the surgeon happy with how everything went. Most nerve-wracking wait I"ve ever had! She's waist to ankles in plaster and has settled surprisingly well for daytime - nights are another matter altogether. I'm finiding it really difficult, because she won't go to my husband, just screams and screams, and I've no family living nearby to fall upon. Last night I finally got to have some decent sleep at around 6am, and she slept from then to 10am. On top of it all, I have a cold, so am feeling miserable and having trouble coping in the middle of the night! Some family friends offered some support, offering to take her for a couple of hours, but then kindly informed me that they "don't do nappies". Real helpful. Everyone thinks that I'm just being brave and proud, thinking that I'm the only one that can do it, but with comments like this, what else am I supposed to do? Grrrrr.

But I figure, its day 4 already, over half way into the first week. She's booked in at the RCH on Tuesday for her MRI so hopefully that shows everything is fine. So it's just panadol for now and hanging in there that my beautiful girl will settle at night soon and we'll be speeding towards the day where we're plaster free.

Thanks for the chance to vent, and for all the support on this site.

Corelly

Hi All,

Corelly - hope your daughter settles down at night soon. It's hard enough to cope with without the sleep deprivation!! I remember the first week did feel as though I had a new born again, even though my daughter is one already...

We have 1 week to go until Olivia's cast change - I REALLY can't wait - then it will seem like we can count down the days once we are over half way... I find it hard sometimes to remember what she was like pre-cast. I can tell she is getting frustrated sometimes - she is at that age when she really wants to be getting down and joining in with everything, but just can't.

Olivia is getting quite constipated at the moment - she tries really really hard to do a poo, but only one little nugget comes out... (sorry if tmi) I think it's ages since she did a really squishy one, which is nice for the nappy changes, but can't be much fun for her!! I did read that it was quite common for babies in spica casts, as they can't move around at all but are eating normally... Has anyone else had this problem? Any suggestions for solving it?

Bertie

Hi everyone,

I haven't posted since mid June (I think) and I didn't post that much I was new here but I would like to give an update on my daughter's hip dysplasia that will give some moms some huge hope and encouragement! In a nutshell my daughter was born 10 days late and was in the frank breech position for months!! Thanks to the doctors telling me that her head was down week after week at my ob appointments my baby was born with bilateral severe hip dysplasia. You would think that after my u/s 3 months prior to giving birth showed her in the frank breech position that they would have monitored more closely but I guess that's not their procedure or whatever. Would never go back to that group of doctors ever!

Anyways she went into the Pavlik harness for six weeks 24/7 which put her hips in the right place (she was diagnosed at birth, got harness on at I think 3 weeks old). Then straight from that she went into an abduction brace and is stil in it. After 10 weeks in the brace the dr. said that she has made remarkable progress and he said he finally really likes what he sees on her xray pictures. He previously was leary about the outcome. So now she can have it off for a few hours each day and at our next xray visit she will prob only have to wear it at nights!! I am ecstatic (sp?)!! I asked him what are the chances that she will need surgery and body cast and he said very, very small. What a relief.

This doctor was recommended to me and I was told he was the best.

It will be so nice to hold (finally) my baby without her being in some kind of hard plastic foam or strappy contraption!!!

I just wanted to share this with anyone whose baby was diagnosed with severe bilateral hip dysplasia or even if the diagnosis was less severe or moderate. There is HUGE hope!!

She is 4 mos. old now.

I hope this gives some hope to some moms.

lesa

ps - i hope all of this made sense because i am extremely exhausted today with a wicked headache. LOL.

Hello everyone,

Lesa - so glad to hear your daughter is doing well. I know it is best to have caught it early (unlike mine, who wasn't diagnosed until 11 mths), but I can imagine it must have been really hard for you not to have been able to give your new tiny baby proper cuddles!

We have just been in to the hospital today to have Olivia's spica changed. She was pretty grump all day - obviously remembered last time, and was not happy one little bit as soon as the nurses put the id bracelets on. Cheared up later after the new cast was on and a nurse produced a biscuit...

Anyway, the surgeon said that her hip was nicely stable and the MRI looked good, so hopefully, after this cast and in 6 weeks when it comes off, she will be ok! At least we are into the 2nd half, and hopefully time will go a bit more quickly now!!

She has started commando crawling in her cast just in the last week - she's going to have super human strength in her upper body from hefting that great cast around!!

Hope all the other babies are doing well - Corelly, how are you doing?

Bertie

Hi Ladies,

I hope everyone is doing well.

I also wanted to share some good news by providing an update, giving anyone in a similar position hope that there is light at the end of what seems a very long tunnel. My bub was diagnosed with hip dysplasia (left hip) at 6 weeks old during a 'routine ultrasound' (she was a breech baby). She was put into the pavlik harness straight away and had it on 24/7, without being able to take it off at any time. We were advised the average time babies wear the harness is 12 weeks. At the time this seemed like forever!

At the end of 7 weeks, the specialist finally gave us permission to take it off for a bath each day....and boy did we all enjoy that! We were also given the option of either keeping Sienna in the pavlik harness for the next 5 weeks or change to a Dennis Browne brace. The brace seemed alot easier for all concerned and so the change was made. We are so pleased we made this decision, as not only was it easier to take off and put back on, Sienna had more freedom to stretch her legs and not have a harness going over her shoulders, down her back etc. We saw an immediate (positive) change in the way she moved her body, especially her arms and she seemed to grow inches overnight (the pavlik harness has the legs in a 'up' position, whereas the brace doesn't).

The next 5 weeks went by really quickly. An x-ray at 12 weeks confirmed Sienna's hips are now 'normal' and we don't need to wear the brace anymore! Needless to say we are absolutely thrilled and although it's only been one week since the brace came off, it really does seem like such a long time ago. It feels so lovely to have our 'baby' back (she's now 5 months old) and being able to have hugs without any 'contraption' on her.

So to all the mums (and dads!) who are about to embark on this 'journey' or anyone who is already living with hip dysplasia, hang in there and don't forget to enjoy your bub. There is light at the end of the tunnel and it's oh so rewarding!

Take care,

Natalie

Hi it's me again...lol

I hope everyone is doing well and your little ones are healing fast!


I have been reading posts on another website and read some disturbing things. I have read posts from women who are still suffering from ddh problems well into adulthood after being diagnosed in early childhood. Does this mean when my little one gets out of her brace she is not going to be better forever? I mean do these children have problems for the rest of their lives? Do any of these babies grow up to never have to deal with hip dysplasia again or will there always be issues with the hips?

Just when I thought I was getting to the light at the end of the tunnel I start reading things that make my hopes drop dramatically.

And what else is crazy is that i have never heard of hip dysplasia until I had a baby and I have never known anyone with it or seen a baby in a cast or brace until my own.

One more thing....I am from the USA and have yet to find a website about this hip problem that has members from the United States. So having said that is it more common in countries other than mine? I totally feel like I am the only woman in the whole USA with a baby that has this. What's up with that?

Thanks to anyone that can give me any insight on this!!!!!

love
lesa

Hi Lesa.

I had never heard of it either, but then people started coming out of the wood works! I found that my cousin had it and my niece (found out it was heriditary) and people would stop me in the street (even at the airport) to say their child had also worn a brace as a baby. Sorry to hear you feel all alone - I'm not sure if you are on Facebook - but there are a few groups on there related to hip problems in infants - there's bound to be some Americans (I'm an Aussie).

I also asked the question to my Orthopeadic Surgeon if Sophie would have hip problems as she got older - he said NO! He said the only thing she would or could have problems with are "her" children and that they would need hip xrays (before they were 2 months old) whether it be a boy or girl.

Big hugs and I hope that helps.
Susan
xxxx

Hi, me again Lesa.

Just checked on Facebook in my groups for hip dysplacia and there are quite a few people from America. Groups are: "Hip" Babies; I love a kid in a Spica Cast; Hip Dysplacia Awareness Group - there could be other groups too. Login | Facebook

Cheers, Susan xxxx

Hi Susan,

I have been trying to post a reply and for some reason it's not taking it. So I hope this one goes through. I hate having retype everything I just typed and trying to remember what I had typed......

I hope everyone is doing very, very well! Hope the little ones are good!

Anyways, thank you very much for responding and thank you to Bertie also for responding.

Susan, what a relief to hear that from your doctor that Sophie won't have hip problems when she gets older! That was a relief for me to hear as well. When we go to our x-ray appointments I am usually pretty nervous and worked up and I can't think straight...I forget to ask the questions that I want answered (I even have them written down) and if we get good news at an appointment I just can't wait to run out of there I'm so happy...again forgetting to ask questions. What a goof I am...ha ha

Thank you for finding some American hip sites Susan...as far as facebook, I'm really not to familiar with it I wonder if I can access anything without joining. Is facebook like that myspace site? I'm not on that either but I am kind of familiar with what it is and what it's about.

I have enough trouble just trying to post on THIS website. I need more practice I guess?

I will quit rambling and want to thank you again for the info and hope you and you LO are doing great and enjoying your summer (if it's summer where you are or maybe it's summer all year around)....see, I don't even know my geography.

lesa xxoo

Hi Lesa,

When we had our final appointment with the orth specialist I asked what medium-long term issues might we have with Sienna's hip. He said there wouldn't be any issues. All we need to do is see him again & have another x-ray when she is walking (he suggested at around 18 months old) and again when she starts school. This is just to ensure the hip is still 'normal'. As your bub and mine are in similar positions (the dysplasia was picked up at around 6 weeks of age & they had treatment straight away), maybe the prognosis for you is also positive.

I too was concerned (and a small part of me is still concerned) about future problems, however I have to have faith and believe the specialist.

Hope this helps!

Cheers,

Natalie

Natalie,

I posted a reply a couple of days ago to you but once again it didnt go through. I'm having computer trouble so here goes another try and i hope you get it.

We are going to have to keep getting xrays as well, Im sure to make sure all is well...so to me that is saying that something CAN happen in the future otherwise we would not have to get more xrays....but I hope chances are slim to none.

I wanted to ask you if your little one's legs seemed "funny" after she got out of the brace. Like did they seem floppy or did her feet/knees turn outwards? It seems as though my baby's legs are so used to being in that position (with the harness and then the brace) that they kind of go that way naturally now although she still pulls them up and rolls around and puts her toes in her mouth. Did Sienna's legs do anything similar? She was not braced and harnessed as long though so maybe her's are normal?

Anyways you must be overwhelmed with joy now that you have a contraption free baby!!! That is awesome!! I can't wait for that day! I feel it coming though....it might be a little while yet since her case was severe but I know in my heart she will be fine.



lesa

Hi Lesa

Thought I would reply to your concerns about your daughters legs turning, staying in the same position. DD1 was in two different braces for 6 months in total and her legs were the same when she came out of it, it seemed like it was a natural position for her and her feet turned too. She is now 2 years old and has been out of the brace for about 14 months. She learnt how to walk about 3 months after the brace coming off I think it took a little while for her to get the strength back, she could stand but it took her awhile to get the hang of walking.

We started swimming lessons as soon as she had the brace off during the day and I think it helped her with her muscles and using her legs. Anyway you would never know now that she had hip problems she rans non stop, jumps and climbs all over everything. She had severe hip displaysia in her left hip and was almost sent for surgery just before christmas in 2007 but she improved on her own.

Hi Lesa,

Sienna's legs don't seem 'floppy' but yes her feet/legs turn outwards...it's not so noticeable when holding her, more so when lying on her back (especially while sleeping). I am not too concerned about it, as for half her life she had her legs in this position, so it will take some time for them to adjust. She loves to weight-bear on her legs, which has to be a good sign.

Take care and I hope it's not too long that you also have your bub 'contraption free' :D

Natalie

Hi guys - just checking if anyone is still reading this thread?

There seems to be 2 the same, I think everyone is in the other one ;)

Hi

I just joined as I came across the thread doing a search for hip braces. My 20 month old has just been diagnosed with dysplasia in both hips and was placed in a brace (on Monday). It was missed by her paediatrician whom she was under the care of until 12 months old. We are all in shock, as Josie has gone from being a vibrant and very active toddler to being completely immobilised and distressed. They assure me she will walk in the brace but I can't even get her to try standing. She just cries and says ouch. Her sleep has gone to the dogs also. We just finished a week at sleep school before the brace and were finally achieving some results, but now Brendan (my husband) has taken to sleeping in the spare bed with her again, as she is waking constantly and we are not sure if the teaching to sleep routine is appropriate now??

I am really stressed out and not even sure that we are doing the right thing. Any suggestions for encouraging movement, sleep and entertainment would be greatly appreciated.

Karen

Hi Karen,

I don't know if anyone is still using this thread - jump over to the "Hip Dysplacia Support Group" thread which is really active.

20 months old is so hard to be diagnosed. My DD was first diagnosed at birth and the first brace went on at 7 weeks and the adjustments were difficult for her. I can't imagine what you must be going through.

The things these babies can do in the brace is astounding. My DD learned how to roll over and sit up in it - she's 10 months old and not up to walking yet anyway, so we haven't had to come to that hurdle. Give your daughter some time to adjust and I'm sure she'll give walking a go again. Sleeping does become impossible. The discomfort they feel is evident. Try putting a flat cot pillow under her legs while she sleeps to try and lift them a little so the brace doesn't put to much pressure on her legs.

What sort of brace is she in?It's not an easy journey, but if you come into the other group, you'll find many mums and dads going through the same thing and the support is just incredible.

Good luck

Corelly.

Hi

Firstly, I'm so sorry for all of you who are going through this. My little girl's hip is not dislocated so we didn't need surgery. I cried for 2 days just with the brace (stupid, but I can't help it). I can only imagine what you are feeling.

My daughter was diagnosed with hip dysplasia at 5 months. She wore a brace for 6 weeks and I was so excited when the doctor said we could move to nights only as it was 99% fixed.

We went back for our six week review yesterday and it has reverted. It is now worse than before and she is now in a rhino brace full time for 8 weeks initially. I feel really guilty as we went away over January and her brace stopped fitting, so we could not put it on. She only wore it for 3 out of the 6 weeks at night. I think I've set her back. She was sleeping on her side and rolling over, feet in her mouth. So angry.

Has anyone else had their diagnosis reversed?

Nat

Hello,

I am new to this blog, but my 4.5 month old baby, Lucy, got a DB brace on monday for her left hip dysplasia. The doctor/physio and orthotist all told me she would adapt really quickly. She is fine when she is awake but has hardly been sleeping at night. We have had a week of no sleep! She was a brilliant sleeper before. Is this going to settle soon? Has anyone got any suggestions? I have been giving her panadol, have put a pillow under her legs and nothing seems to work. I am going crazy from sleep deprivation.

Josie

Hi Josie

Our Josie (now 21 months) was put in a brace about 6 weeks ago. The first two weeks were a nightmare with sleep. We tried panadol, which seemed to help. I didn't use a pillow as she is too old and moves around too much. She did settle after 2 weeks and found a way to roll herself over. It does get better. Josie now crawls and cruises along the furniture.

We are off to the beach for a week in the chool holidays and I have decided for everyone's sanity that Josie can have more than 1 hour out of the brace a day for that week. Will see how it goes.

Hope it setlles for you soon.

Karen