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!
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.
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 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?! 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 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.
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.
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.
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.
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
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 - 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?
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.
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?
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
Last edited by Natalie; August 8th, 2009 at 11:49 AM.
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
Last edited by Lesa; August 11th, 2009 at 12:46 PM.
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.
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
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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 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
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.
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