Hip Diplaysia Support Group #3

[bridee]

Hi Becky,

I suspect you will you be referred to an Orthapaedic Surgeon as they are the dr's that treat hip displacia (don't be concern about the surgeon part they don't have to operate).

[Suezt]

Hi everyone. Hope your week is going well!

I'm not sure if any of you are Facebook fans but I've recently joined up and yesterday/today I have found 2 hip groups - one called "Hip" babies and the other I love a Kid in a Spica Cast. There a quite a few children on there that are older - I thought it may be helpful for you Rachelle.

We're counting down the days here. Sophie's appointment is on the 27th Nov...fingers and toes crossed she'll come out of the brace. That would bring her round to 7 months with it on.

Becky - welcome. All the best for the appointment next week. It's great they picked it up so early. Sophie was detected with hip dysplasia at 4mths when the maternal nurse noticed her uneven legs - a nice slim leg and a normal fat roll leg (to be honest I never noticed). Too when she measure her one leg was slightly shorter than the other. But they can't detect the above until at least 4 months when they start to get a bit of fat on them. The orthopaedic surgeon then left if for another 4 months in the hope that it would rectify itself but unfortunately it didnt'. So Sophie has been in a Rhino brace since she was 8 mths old - she's now almost 15 mths old. She's adjusted very well to the brace (better than me) and although her development is well behind other kids her age I'm sure once the brace is off - she'll be off and will take no time to crawl/walk etc.

Anyway, I must get to bed. Hugs to all who need them. love Susan xxxx

[becky]

Thankyou everyone. I have my fingers crossed Chels is ok next week. I dont know if I am as brave as all you guys.
Sue- how long does your DD need to be in the brace for?

[KylieCL]

Hello All,

Well i have some great news! Azaliah now only has to wear her brace for her night time sleeps now and i am so happy about it!! Her appointment went really well and the Orthapaedic surgeon was very impressed with the development. He coverage is better than expected but it is still just a tiny bit to flat on the outside. He has promised me that our new years present will be no brace at all! I had expected that she would need ot be in the brace at nights but it doesnt matter because atleast now she gets to go in her jolly jumper and walker. It Gives us both a bit of time out from each other. I also went out and bought her some shorts- i am so over putting her in dresses!

Today she has been pushing her self along the carpet using her back legs. She cant pull them up underneath her as they are still out froggy like but she is still using them as best she can. It's so cute but has caused a couple of nasty small carpet burns on her forhead.

Rachelle- Im glad to hear that Taylor has adjusted well! You seem to have most things figured out, expecially when it comes to keeping the cast clean. I bet you cant wait for a new one!

Becky- I know what its like to have this little new born and find out that something is wrong with her. My baby was diagnosed at birth and we were off to see the orthapaedic surgeoun within 2 weeks of her birth. They waited to see if it would correct itself but by 4 months and after seeing her first X-ray it was obvious she needed to be braced, so now we are halfway through our journey. Goodluck and once you get your head around it it truely is fine and you learn to cope so well!

Karen- i hope the next 3 and a half weeks flies by for you! I can only imagine how much you are counting down untill the Spica is taken off!

Susan- Good luck for your appointment on the 27th! Fingers crossed these will be Sophies last few weeks in the brace.

Take care to all of you!

[nicoli]

Hi everyone,

I am so glad to have found this forum to find that so many other mothers are feeling the same way as I am. I only found out yesterday that my 3 month old daughter Scarlett has Hip Dysplasia and I can't stop crying!

I have only just started to feel comfortable being a new first time mum and now I feel like everything is going to change. I feel silly bacause I have been told this is totally correctable but I feel like I have been robbed of my happy healthy daughter. SHe is so smiley and content and I worry that she will hate having her harness on (we are having it fitted on Monday).

I just fed her and changed her nappy and couldn't stop thinking about how much more difficult everything is going to be. SHe really loves having a bath and now that is out for a while. She is so animated and happy kicking her legs around on the mat and now she won't be able to. SHe has even just started to start to roll on her side and she will no longer be able to do that. No chance of taking her swimming like I had planned and I just bought a heap of new clothes that she won't be able to wear.

I know once she has the harness on and I start to figure things out I will feel better but right now I feel so sad that I am about to lose something. I know I need to be possitive and my little froggy sill be OK in the long run but it's just hard.

Nicole

[bridee]

Nicole - Welcome. We all know how you are feeling, it is upsetting when you first find out. But trust me Scarlet will adjust really well - kids are so adaptable. I will be thinking of you in Monday. Please let us know how you go. I was really surprised how my daughter coped getting the harness on, which really helped me cope. I ended up thinking if she isn't bothered by it then why should I be.
Lets hope your journey is a short one.

[minimatron]

Hey Kylie congrats at Azaliah only having to wear the brace at night. It is so nice to see a light at the end of the tunnel. Olivia is 6 weeks into her second lot of 8 weeks of night wearing. I cant believe how quickly she has caught up in development. She still has frog legs but is slowly coming in. She rolls both ways and commando crawls and crawls backward. The flat spot on the back of her head is coming good too. And she can sit on her own for about a minute at a time.
Welcome Nicole and becky, and good luck. Its tough initially, but you do get used to it. And its a great forum in here...ask as many questions and I am sure you will find the answer.
bye for now
Melissa

[Suezt]

Welcome Nicole. You're so not alone in how you're feeling at the moment. I think we've all shared how upset we all were at first and the tears just kept flowing. But as you can see - we're all doing pretty good now and like Bridee said - once you see how well your little baby adjusts it really does make it all so much easier to deal with. My Sophie went into the brace at 8mths and it totally upset me more - cause I knew that was the age where she'd learn to crawl, walk etc. and that she was robbed of that opportunity! But now at almost 15mths she's adjusted really well and learnt to get around in her own little way. She can't walk or crawl but she bum shuffles everywhere! It's super cute! Big hugs to you and I'll be thinking of you on Monday.

Becky you asked how long Sophie had to wear the brace. Each time we go for our Orthopaedic Surgeon visit I hope that it's the end but each time I'm disappointed - another 4 months is usually what he says. But fingers crossed this time he'll have good news. She's been in a rhino brace for 7 months now. She's in it 20 hours a day - so the broken 4 hours she's out of it is totally party time - she's off and scooting around the house like crazy!

Kylie fantastic news! Celebrating with you!

Anyway, must get to bed.
love and hugs to everyone,
Susan

[nicoli]

Hi all,

Thanks for the words of encouragement. We had the harness fitted on Monday and I thought she was going to take to it well at first. She didn't fuss at all when it was fitted and even fell asleep in the pram as we were leaving. Then we got home! She basically didn't stop crying for the next 14 hours. She was already tired but every time she started to nod off her reflex to kick or straighten her legs kicked in and she would wake her self up with a huge shudder to her whole body and begin screaming. We tried taking her for a walk to get her mind off things but the same thing happened. She wanted to sleep but would wake herself up every minute or so. I ended up keeping her in the pram all night and rocking her when she would startle. She did fall asleep by about 3:30am and had a few hours sleep. I think she is finally getting over that part of being in the harness but when she is awake she is still so miserable.

We went to the orth surgeon yesterday and he said she would most likely be in the harness for 12 weeks. I don't know if it is 24/7 for that entire time - I hope not. He also said she might have to go into another brace for a while after that depending on how she goes. Reading everyone's stories has already taught me not to set my hopes too high when seeing the doctor.

Scarlett finally got some longer sleeps in last night as is actaully settling much better when I put her down although she will not go to sleep in her cot yet. I am still putting her to sleep in the pram in her room. After a few more days I'll try the cot again.

Anyway - you can expect me to rant and rave here a bit over the coming weeks/months as I think people who have not experienced this can't really understand. All anyone can say is that it is all for the best in the long run etc (which I know) but they don't have to live through it all day every day.

Nicole

[Rachelle]

Hi Ladies!

Taylor finally got her new spica cast on yesterday! She did have to go under anesthesia for it and had a hard time after she woke up. But, she is doing great today and is back to normal! I convinced one of the nurses to get us purple casting from the cast room and they were able to put it on Taylor. Purple is Tay's favorite color and she is very happy about it today. It's so much better than the plain and boring white. So now, we are 1/3 of the way through the cast process. She'll go in for another cast change on Dec. 11th and then by mid-January she will have it off! Even though it's two months away, I look forward to being able to take her brace that she will have on, off and being able to give her a bath!



Nicole-I know how hard it can be to see your baby uncomfortable and not be able to make them stop crying! Scarlett is quite a bit younger than Taylor was, but all the same, they still have to adapt. I am sorry that Scarlett is having a hard time and pray things will get better for you both. Hang in there. Let people help you/bring you meals/clean for you. I found this very helpful and that way I could focus my attention and helping Taylor cope. I know it will get easier once Scarlett adapts to it.

Kylie- Congrats on the great news for Azaliah!!!

Susan- Thanks for the facebook info. I am a member on facebook and will check out those forums! Good luck for Sophie's appt on the 27th!

bjrose- Thanks for the info. It's good to hear that you know of people who have lead normal lives with hip dysplasia, but, for those of us that actually have to walk through this process with our daily, it's extrememly difficult emotionally on us moms and our babies, something that really nobody can understand until they've had to go through it.

Becky- Good luck with your appt. today! Let us know how it goes!


That's it for me ladies. I will keep you all posted and hope you have a great week!

Rachelle and Taylor

[Suezt]

Nicole, big hugs to you. It's so hard that first week after the brace is put on. Sophie was waking every 1/2 hour the first week - considering I was emotional anyway that week - the no sleep was just a shocker! She did eventually start sleeping through again - but I think it took at least a week and after that I got a bit tough and let her cry it out a few times, because I was just way too exhausted and so was she. It only took a few nights and she was sleeping through again. Try and get as much rest as you can through the day and like Rachelle said - if people offer to help - let them!

It's sad to say - but I now am really nervous about her getting the brace OFF and how it will affect her sleep! lol Anyway, I'm sure we'll cross that bridge when we come to it. Less than 2 weeks til our appointment!!!!

Rachelle, it seems Taylor is adjusting so well! What a trooper! It's so cute that she was excited about the purple cast. It's the small things isn't it!? I'm under Susan Johnson Tanner (Aust) on Facebook if you wanna be my friend lol

Have a great weekend ladies. Susan xxx

[becky]

Grrrr!! So annoyed! I rang the Dr just before we left, and the x rays got sent to the wrong place. NOT HAPPY. So now we have to wait until next Wednesday. Another whole week of worrying........

[ingrid]

Hi There,

I am another newby. My daughter Jasmin was diagnosed yesterday with hip dysplasia at 6.5 months old. SHe has been to her 6 week check etc but it went undetected. It wasnt until someone at childcare picked up on her different length legs last week that we had it checked out and sure enough diagnosed. We see an orthopedic surgeon this coming Monday (they certainly like to get teh ball rolling quickly once they find out as she only had ultrasounds and x-rays yesterday). I was just wondering if anyone can tell me what to expect. I kind of have some idea that she will likely have an open/closed reduction and then a cast for 3 months but that is about all I have any ideas about. Dont even really know if this is a reasonable assumption or if it is possible she wont even need surgery? Anyone with a similar experience that can let me know what they went through?

Thanks
Ingrid

[Rachelle]

Ingrid- Welcome to BB! I am sure every case is slightly different, but from my understanding, the Ortho. surgeon will probably take her to the OR and attempt a closed reduction followed by the casting and then if that doesn't work he will do the open reduction. But being that she is 6 and 1/2 months old, they may try to do the brace. From what I have been told, babies over 6 months require the cast. Good luck to you and keep us all posted.

Susan- Thanks for your facebook info. I would love to add you as my friend! Taylor is still crazy about her purple cast. We are almost to the 1/2 way point and I am excited to get it off so that I can at least remove the brace to give her baths.

Becky- I'll look forward to hearing from you next Wednesday. Sorry you've had trouble getting your results! Cherish the time you have with your little one now, just in case she may be put in a brace in the next few weeks.

Take Care all!

Rachelle

[BubbaGirl]

Hi Ingrid,

My daughter was 5.5 months when diagnosed and comes out of the spica (plaster) in 2 weeks after almost 3 months. She will be eight months old this week.

Like Jasmin, the problem wasn't detected at 6 weeks even though she had uneven creases and an ultrasound. Apparently it was evident but an incompetent radiographer did the scan. By 5.5 months her shorter leg was quite evident.

Every experience is different and each specialist will recommend different treatment times and options. We are under the Sydney Westmead Orthopaedic Unit and Summer's treatment is 3 months spica then 3-6 months Dennis Brown Splint. It will depend on how bad the hips are as to the treatment however it is probably likely she will go into plaster due to her age.

At first I just cried for the whole week leading up to the closed reduction surgery (they cut the muscle to allow proper positioning of the legs) and for the first few days after we brought her home. I found her nappy changing absolutley barbaric and honestly wondered how I would cope for the next 3 months of not being able to bath her and care for her the same way.

But we worked it all out and I can honestly say it was a lot easier than I thought it would be. We have a food proof method for keeping the area clean and we treat Summer as normal as possible. She even drags herself around on the floor in the spica.

The hardest thing to accept is the delayed development but in the grand scheme of things it is such a short period of time in your child's life after which they will be caught up to the others soon enough.

Just put yourself in the good hands of someone who knows what they are doing and you will be fine.

Summer has coped so well and I have even contined breast feeding her throughout the time (had its challenges) so just stay strong and take it one day at a time.

If I can help anytime just send me a note.

BubbaGirl

[ingrid]

Thanks for all your input. We go and see the orthopedic surgeon today so will find out what the next course of action is.

BubbaGirl, Jasmin was only checked by the Pediatrician for her normal 6 week check and I know he checked her hips but I am not sure he looked for uneven skin folds. Anyway, I dont really blame him for missing it. It was our childcare that picked up the uneven legs so I am grateful (in a strange sort of way) to them as we hadnt really noticed her uneven legs. It is obvious now that we know but being first time parents everything seemed fine and she was developing quite normally. I expect our treatment to be somewhat the same as Summers. Fortunately we have done quite a bit of research and study into this since we found out and we have some idea of what to expect. I guess it is going to be a bit different once we get her home. We dont know what exactly to expect as far as things like using her existing car seat, high chair etc. I guess we will just have to find out what works for us. Breastfeeding I can imagine will be quite difficult. I have already weaned her day feeds and she is only feeding morning and night. However she has had a really bad cold in the last week making it difficult for her to breastfeed so we have been giving her bottle and I have been expressing. I have also had a cold so my supply has really dropped (without her feeding as much and me being sick). I am kind of wondering whether it might be a good time to wean her completely (as much as I really enjoy the last feed of the night).
It is so hard to see your child sick. We had a few tears last week when we first found out and she was really sick with her cold on top of that. It makes you cry when you see them cry and there is nothing you can really do for them. I know she is strong and she will probably cope better with it than us. I also realise as you said that in 2 years time no one will ever know because she will be talking, walking and running like all other 2 year olds.
Anyway, must run. Time to get the little one to childcare for perhaps her last stay for a while. She goes Mondays and Wed but we will have to see if they are still willing to have her and if I am still willing to leave her.

Thanks again
Ingrid

[nicoli]

Hi all,

Just wanted to let you all know that even though I wouldn't have believed it Scarlett is pretty much back to her normal happy self after only a week in her harness. She is smiling and cooing again, has stopped screaming on the change table and is even sleeping in her cot again. I don't know if it is just me but she seems to be sleeping more soundly now???

Ingrid - I hope everything goes well at the orthopedic surgeon today. I can imagine how you are feeling right now. I think the anticipation of your baby going into a cast/harness is worse than the reality. All I could do before hand was imagine the worst. But once she's in it, each little step is encouraging. I don't know what it is like with a cast, but Scarlett just fits into her car seat with the harness on.

BubbaGirl - you must be exctied that Summer gets her cast off in 2 weeks.

I found breastfeeding a little hard at first - finding a comfortable position for both of us - but now it seems to be going well (luckily becasue I left it too late and Scarlett won't accept a bottle).

Do those of you who's baby is in a harness put clothes (singlet/jumpsuit) on under it? My physio said it was OK to thread it under the harness by undoing the chest strap even though the booklet I got said not to?

We go back to the orth surgeon tomorrow to check the ultrasound results for hip position.

Have a good week everyone.

Nicole

[bridee]

Nicole - I put clothes over the top not underneath. We had to go up a size so some things look quite big but I ensure nothing has collars as they are too big around her neck/face. Romper suits have worked good the short legs go to her ankles in the harness. I also love Bonds clothes as they are stretchy, before it got hot she was always wearing bonds pants/leggins and seperate top. I also found pants and tops better than all in 1, made her look less bulky.

In the hot weather we are having at the moment I just have her in a body suit with no legs. I'm noticing her feet are quite sweaty which is making the harness smelly but not much I can do about (I think).