Hip Diplaysia Support Group #3

Finding out your baby may have Hip Dysplasia can be a stressful time for parents. The thought of putting your baby in a harness can be very upsetting. Please share your experiences past or present and help support others going through this tough time.

Developmental Hip Dysplasia affects approximately 1 in 600 girls and 1 in 3000 boys in Australia. It is a condition where the hip joint is dislocated or prone to dislocation, due to either the socket being too shallow or the ligaments being too slack allowing the ball of the joint to fall out of place. The left hip is 3 times more likely to be affected than the right, and bilateral hip dysplasia is not uncommon. There are a number of known causes of hip dysplasia including family history (1/3 of cases have a family history), congenital disorders (eg spina bifida or cerebral palsy), breech delivery or a multiple birth.

Signs that a baby may have Hip Dysplasia can be reduced joint mobility, a low clunking sound when the leg is rotated or an unusually large perineum. If only one hip is affected, some other signs can be that the skin creases of the buttocks don’t match or one knee may look higher than the other. Sometimes diagnosis doesn’t come until later (about 2 or 3 years old), and this is indicated by an unusual waddling gait, a limp, uneven hips or walking on tiptoes.

Approximately 95% of babies born with hip dysplasia can be successfully treated. Treatment for a newborn involves a Pavlik harness which holds the joint in place while the baby's skeleton grows and matures. Subsequent x-rays will track the hip joint's progress. The Pavlik harness is effective in over 85 per cent of cases. Most babies will require the harness for between six and 12 weeks and do not appear to be distressed by its use. Babies diagnosed over 6 months old may require a general anaesthetic to manipulate the hip back into position, and an operation may be required.

Most babies with successfully treated hip dysplasia have no further hip problems later in life, although they may be susceptible to arthritis.


Sourced from The Victorian Government Better Health Channel Website

Previous thread HERE

Hi Melissa,

I am sorry to hear that your little one has to stay in her brace. I can't imagine yet how hard it must be. I will pray that God will give you strength to get through it all.

After reading everybody's stories, it makes me sad that all these babies have to go through this and make me angry that there isn't more awareness in pediatricians to catch it in the first few weeks so that our kids don't live months at a time not being able to develop normally. I know I still am in disbelief that my daughter is 18 months old and had gone all this time without her doctor noticing. Arghh! I've been doing good for a couple days and now I am back to crying. It's been almost a week since her visit with the surgeon and the scheduler's still haven't called me with a surgery date. I just want this all to be over with. Right now, I am just cherishing the moments I have with Taylor not in a body cast. I am letting her get as dirty as she wants and fitting in all the baths I have time for. I just feel so sad for her and I can't do anything to fix it and make it better for her! My heart breaks for all that she will have to go through just to walk normally. From what the surgeon said, it sounds like it will be a long road for her since it was caught so late. He said even after her cast comes off, she will be in a brace for at least a year. Apparently kids learn how to walk with the brace on, but from everything I've read, I don't think she will be too happy about having it on.

Sorry I am rambling, it's just been a long and emotionally exhausting week and all of you are the only ones who really understand all of the feelings.

Rachelle

Hi Ladies,
Minimatron-
My thoughts are with you. It is not easy to hear that your DD has to be in the brace for another 8 weeks. That time will fly I promise.:hug:I was told by the area nurse-DD being only 2 weeks old and by a local doctor when DD was 3 months old not to worry as she would grow out of it?? One month later, after being concerned about it I went to see a specialist only to be told that she had a serious case of "clicky hips" and had to go into a brace asap. 24 hours later she was fitted and will now be in the harness for 4-8 months. I understand the frustration of having to strip her down, bath her and then place the harness back on. DD was upset for a month but has now settled down. You are not being selfish at wanting the best for your DD so dont beat yourself up as you are doing a wonderful job. Anyone that has to watch there DD go through this is entitled to vent and talk it out with those that have and continue to go through this. I vented last month about my DD and it was you and other members that helped me get though that first week. Hang in there Minimatron, we are all here to help.Big hugs.

Rachelle-
I understand where you are coming from, it is emotionally exhausting and draining to go through this. My thoughts are with you and your DD:pray:. We are all going through this and it is heartbreaking to watch. My DD is in the Pavlik Harness for 4-6 months at this stage, but she may need to be in it for 8-12 months. We were told that if it was picked up at her first visit then she would have been in it for a few months not 4-8 months.I have heard that kids in the brace will often crawl or move themselves with the brace on. Children seem to cope better than the parents at times.
Hang in there :)

Kartier

Thanks girls its really good to get things in perspective. Thank you:)
Melissa

Thanks for the encouragement Kartier! I really do appreciate it. I have to ask if anyone filed an out of court settlement with their pediatricians? Because all of this was not caught 18 months ago, there is going to be the cost of the surgery (which was preventable), my time loss from my self-employed job, my daughter's dad's time loss off work, and at least a 6 month delay in my nursing school which means 6 months lost wages once I graduate. I loved her pediatrician. I just want her to learn from all of this. She feels horrible and knows that she messed up. I want to focus and getting my daughter through all of this but it's hard when you don't know how you will make the finances work out during this long road and after.

Melissa, I know you will pull through. Just take it one day at a time and let yourself feel the way you need to!

Rachelle

Hello Rachelle,

My name is Kylie and i have a gorgeous (nearly) 5 month old daughter Azaliah (Zali). She was diagnosed with hip dysplacia at birth but the doctors delayed putting a brace on her untill she was 4 and a half months old as they THOUGHT it was going to fix itself (which it obviously didnt). Although it is nothing in comparison to what you are going through i can completly understand those emotions- seeing my little girl being placed into the brace for the first time broke my heart but now two weeks on its almost like its been on there forever.

I really miss dressing her up cute and carrying her normally - i cant even take her shopping as she doesnt fit in the capsule of the trolly! Its such a pain in the bum but atleast she gets to take it off for exercise and a bath.

I am to very anxious about getting her brace off as the Orth. Surgeon we went to see in Perth told us that two months will be enough for her in it and i have got this big count down going on for us... i really hope he hasnt just got my hopes up - i really want her to be brace free for her first christmas!

I hope everyone is well and that your precious children are doing well in their respective braces/harnesses/casts.

Thinking of you all

Hi ladies

Mel sorry to hear that your appointment didnt go as well as you had hoped. It must be devastating for you but I suppose its best to make sure things are 100% before getting rid of the harness. It would be a shame to have to go back to it once your DD got used to being free. Hope the next 8 weeks will be enough :hug:

Rachelle lots of hugs coming your way!!! You must be shattered to find out that your DD needs surgery. We're waiting to find out if our daughter needs a harness and thats distressing enough. I cant imagine how upset you must be right now but as the others have said the babies seem to adapt alot better than their parents do. I hope the pain and discomfort for your precious daughter is minimal and short lived. Best of wishes to you xx

Kylie hope Zali is adapting well. Thinking of you xx

I'm starting to get a little anxious about our next ultrasound. Mikayla seems to favour lying on her side and I cant imagine that would be too good for her hips. I try to move her onto her back once she's fallen asleep but she really doesnt like it and now that she's getting stronger she eventually moves back on to her side. I really hope that it hasnt made things worse.

Hope you and your bubs are all doing well.

Take care xx

Hi All,
I just wanted to post to first vent my story and secondly seek some support and suggestions for what i am going through.
I'm 32 yr old new mum whom was born with CHD that wasn't detected until i was almost 5, many operations and years of hospital visits to finalling repair my right hip. I currently am in the processes of having another operation and my movement is very little now and am in pain daily making it hard to walk let alone carry by baby.
3 Months ago i gave birth to a beautiful girl Madilyn and she has since been diagnosed with the same thing but in both hips and as of friday is in a Dennis Brown Bar. Firstly i'm deversated that she is going through the same thing and for 3 days now my baby has done nothing by cry and eventually cry herself to sleep. I've been reading on the site and most people have said they babies have been fine with the brace so i don't understand why Madi is soooo upset. It's not only breaking my heart but breaking me full stop- I Don't know what to do!!! :wall::cry::angry:
I called the hospital and they say to "just give it time" but they aren't the ones trying to handle my princess. She's not sleeping and not eating properly either and as for the suggested more tummy time - i feel that i can't even get to the stage of having playtime.
Please if you have any suggestions i would be greatful.

Bizzib, I'm sorry don't really have any suggestions just wanted to say I'm thinking of you and hopefully it will get better. My daughter is in a pavlik harness so not sure if babies adapt better to it than the bar. Hopefully someone else here will have suggestions for you. Just remember it is much better your daughter go through this now than later and have the problems you had/have. It will be worth it in the long run.

Hello Bizzib,

I have to say that my daughter was shoking for atleast the first week with brace on (she is in the 'correctio'). She wouldnt sleep and we had a hard time getting her to feed as it was really difficult for her to get comfy- it was just like having a new born all over again.

Things will get better i can promise you that, babies adapt to things really well!

Thankfully Zali can have her brace off for upto 2 hrs a day (i rarely give her that much time though). during this time i put her on her tummy and massage her hips to help with any cramping from staying in the same position all day and i also massage her back and shoulders... at the start i also gave her a dose of nurophen but she doesnt need that any more. This really seems to calm her down and help her settle into bed.

Now after two and a half weeks with the brace on Zali slept her first full night in her entire life last night!

Hi Ladies,

I just wanted to say thank you for sharing all of your stories. It has really helped me this past week.

Susan-Thanks for the website. They were so helpful and I feel better prepared for my daughter's surgery.

Kylie- That's great that your daughter is sleeping better! I am sure you feel better too since you are sleeping better hopefully.

Bizzib- My prayers are with you. This must be hard and since I am on the pre-surgery/spica cast side of this all, I don't have any advice. But, from what I've read from my own research, just try to keep her routine as normal as possible and have structured time throughout the day with lot of activities and walks to help keep her mind off the fact that she can't move normally. I hope that helps and pray it gets better for you and your little princess!

Teepee2- Thanks for the encouragement. I am sure that Taylor will adapt better than me. I just know we have a very long road ahead of us. I hope all goes well with Mikayla's ultrasound!

So to keep everyone up to date, we finally have a date for Taylor's surgery (sooner than I wanted). Taylor's surgery is scheduled for next Thursday morning (October 11th). I have no clue how to prepare and just wish I had more time to get organized. Does anyone know how to deal with an 18 month old in a spica cast. It just seems as though it may be difficult since she is used to walking and climbing. She is so independent and I'm concerned she won't adapt to being immobile.

Anyway, well wishes to all of you!

Love, Rachelle

Hello Rachelle.

How are you feeling this week?

I just wanted to let you know i am thinking of you in the lead up to Taylors surgury! I hope everything goes well and Taylor adapts well to her cast- i'm sure she will with a great mummy to keep her entertained!

And hello everyone else!

Zali is doing really well! She has had a cold but apart from that she seems to be ok. Sad thing is she cries now when i put her brace back on after her bath its like shes saying "no mummy!" Aww it breaks my heart!

Thinking of you all

Hi Kylie,

I am feeling better this week about the upcoming surgery, although Taylor and I have both had cold and the stomach flu this week. We are finally on the mend and I think she will be 100% better by the time of her surgery on Thursday. We are going in Wednesday for a pre-operative visit.

I hope you and Zali are well too!

Rachelle

Hey Rachelle,
Good luck with Taylors surgery on Thursday, you will be in my thoughts.
Kylie, I know what you mean about the cries when you put the brace back on. Its a nightly occurance for us. I would have to say that Olivia, although only six months old, is such a patient kid. God bless her. I am so lucky. We start swimming lessons this morning, which I am so excited about. I am hoping she will take to it easily. I was swimming every morning with her up until I was 34 weeks pregnant, so I am probably the most excited...havent been in the water much since she was born.
Anyway, better go, I can hear her pushing out her morning poo!!!!!
Take care all
Love Melissa

Hello Melissa!

Yay! we are starting swimming lessons next week i am so exctied too and have bought Zali a few pairs of bathers (and yet i am wearing my old ones, go figure;)) i figured it was nice gentle exercise for her hips and allows her out of that stinky brace!

Have fun!

Hi Rachelle,
Just wanted to wish you and Taylor well for her surgery on Thursday. My thoughts are with you both. Keep us posted on how she is doing. Many hugs

Hi everyone,

Have been reading your messages over the past week and wanted to come on line and share my experience with DDH. My daughter Summer was diagnosed just prior to 6 months dispite an ultrasound at 7 weeks confirming no hip issues. Due to someone's incompetence she now has to endure 3 months in the spica and 3-6 months in the DB brace.

Its 4 weeks tomorrow since the op and we are both doing great (most of the time). After the initial shock, many tears and fears of being able to cope, extreme anger at the missed diagnosis and worries of how to care for Summer, I can honestly say that we are getting on with life as much as possible as a normal 6 1/2 month old child and mum.

At first when we saw the specialist, I honestly could not get my head around the problem and couldn't stop thinking about all the things that were going to change. How would I b/feed her? Comfort her? Know if she got a skin irritation? She loves kicking her legs and having a bath. All the normal, everyday things which had become our routine and her joys were being taken away from her because of someones incompetence.

Once we got through the surgery and a week or so into it - I finally realised that this was not a disability nor a long-term issue (hopefully). We found an OK feeding position, I comfort her in a new way, her sponge baths make her feel refreshed and even though she still tries to roll over in the spica, she really is the happiest little girl. I also found a way to keep her as clean as possible and have only had 2 little leaks in the whole 4 weeks. (The one thing I was worried the most about).

In 2 weeks we go back to Westmead for the cast to be changed. Unfortunatley Summer goes under again and that will be quite distressing. I know though that the last 6 weeks will go quickly and before long she'll be able to kick her legs in the water for the hr a day she can have the brace off.

A nice quote from a friend keeps be going at times - the joy of family life far outways the pain but without the pain there is no measure of the joy. Summer and I share very special moments each day and that's when I realise how lucky I am to have her and that down the track this will all be sorted and she will develop normally.

Thanks for setting this up Shannon cause I think there is a real need for a support group when DDH is so common. Makes me want to get on the bandwagon and make sure no other mums have to endure what we have when these things aren't picked up early enough (will certainly be doing something).

I'm keen to find out more about a few things:
- how much movement in the brace (tummy and thigh straps not the bar)
- does anyone know much about how quickly bubs pick up with their physical development after they come out of the brace ie. legs come back in, rolling, crawling etc. I know this will vary from bub to bub.

A special good luck to Rochelle for tomorrow. All will be fine and stay strong as you have a little girl that needs you. Just give yourself a chance to get into a routine, see how it affects taylor and try to get on with life as normal as possible. I know this is harder when your bub is older but she needs to still be treated as normal as possible. Hope that doesn't sound harsh.

Hope to talk more with you all over the coming days.

Karen and Summer Rose

Hi all. Hope everyone is doing well.

Just dropping in quickly to wish Taylor all the best for tomorrow. I'll be thinking of you and your precious bub Rochelle :hug: xx

Hey Karen,
Welcome to BB. Sounds like you are doing just fine. Olivia has been in the Pavilk harness since she was 5 weeks old...shes now 6.5 months old. For the last 10 weeks, she has been wearing it at night only. I found that her legs are slowly coming in, but arent as straight as other kids. She doesnt find it a problem though. Initially she hated tummy time, with and without the harness on, but now shes fine. She was a little bit behind with things like rolling, but in the past week, I would have to say shes just worked it out. She rolls both ways, although it looks as though rolling from her back to her front is easier...when shes on her tummy, she has a little trouble flicking her leg over, mostly because they are still apart. Shes a while away from sitting because the harness supported her upper body, so its not too stron. Our physio gives us exercises to do to strengthen her torso. When shes on her tummy, she brings her knees under her belly, so she moves a little. Shes more capable of moving around on her back! My little bit of advice is to watch the head. Olivia has a really flat head from being on her back all the time. In heinsight (sp?) I probably should have put her on a bean bag, sat her up on pillows and more tummy time.
Good luck with it all.
Melissa
ps...swimming was so much fun and she was so tired she slept most of the day!!!!!

I haven't posted an update for a while and I am just catching up on the posts.

Good luck for today Rachelle.

Adele has had her Dennis Brown Brace adjusted twice now, there was a lot more improvement this time around so it looks like it may still be off in 12 weeks. Last time he said it could be 6 months so it was a relief today to have good news. We have to go for another ultrasound in two weeks and see the Dr in three.

The positive thing is that Adele is coping fine and is only grumpy for a day after the ajdutsment of the brace so it makes it easier for us to deal with. She enjoys being on her tummy and moved around on the floor today so she was sideways on the playmat.

Melissa I can't wait for Adele to start swimming, I am jealous!

Hi Melissa,

Thanks for your response. Must have been hard in the early weeks of adjusting not only the brace but a new baby as well.
Summer is really strong on her tummy and lifts herself right onto her hands for long periods. She had just started rolling both ways when she went into the spica. Her instincts still tell her to extend her arm and tilt her head to roll but her hips don't let her. I don't think she'll lose this and will hopefully find a way to achieve this when in the brace.

Does anyone else have much experience with this - Summer will be 8.5 mths when she goes into the brace.

I don't think a flat head is an issue as she is upright a fair bit (I use a bean bag, pram and carry her around a fair bit) and she sleeps with her head on the left and right but will keep an eye on it all the same.

I'm interested in knowing more about the swimming lessons ie. when started, what you do in the water with Olivia, is it an actual lesson? as I'm keen to put Summer in the water for the hour she will have the brace off.

Also does any one have any ideas on what clothing bottoms fit bubs in the brace? It will be summertime so just need some thoughts on little pants etc. Obviously wider dresses and skirts work well.

Thanks

Karen

Hi everyone,
Hope you are all well. I wanted to post a question to see if I may get some advice. I have a 6 month old in a Pavlik Harness, she has been it the harness for 5 weeks now and was coping well considering her given situation. However 2 days ago her sleeping pattern changed. She went from sleeping from 6pm through to 6am in the morning to refusing to sleep at all. For example, she was up from 10pm through to 6am in the morning (on and off). When she fell asleep I would place her in her cot-however 5 min later she would wake and scream,not cry but continually scream like she was in pain. Being concerned for her I took DD to the doctor he couldnt find anything wrong with her. She gets so frustrated that she pulls the straps of her brace and hits her legs. This has only started as of 2 days ago, before she was not hassled by her brace. I am not sure if it is a 6 month thing or if it maybe her brace or wanting to move more and getting upset that she is unable to move. However during the day she will go to sleep in her cot, no worries at all. I am at a loss as to what to do as we have tried everything, in the end we take her into our bed and she falls asleep there. Did anyone else have this? Any advice would be great as we have had no sleep for 2 days. Kartier

HI Ladies!

Karen-Thank you for sharing your story. It is so helpful to hear another person's experience as it gives us all strength to walk through all of this. And you are so right, our babies don't have a "long term disability", thank God! I am glad to hear that Summer is over the half way point and it sounds like you have adjusted fairly well so I know in time, we will too.

So, here's the latest. Taylor had her surgery yesterday morning. The hardest part emotionally was giving her to the anesthesiologist's so they could bring her to the OR. Well, that was the hardest part yesterday anyway. The past 24 hours have been almost unbearable. I kept telling the resident on call last night that Taylor needed something to help her relax like a muscle relaxer and he kept saying No and continued to give her narcotics and benadryl which was literally making her crazy. Up until a few hours ago, she had only slept 3 hours total in the past 24 hours. The resident finally agreed to give her a relaxer and now she has slept for over 2 hours. I couldn't help but cry this morning. I've never felt so heart broken and helpless. As a mother, all you want to do is help your children, and I realized that I can't do anything to "fix" this for my baby. Very heartbreaking! But, I know she will adapt in time.

As far as her surgery, it went well. She will be in the spica cast for 3 full months and will have to have 2 cast changes under general anesthesia during that time. After the cast comes off, she will be in the brace for 1 year (the first three months of that, she will wear it 24/7 except for bathing and diapering).

Anyway, I will keep you all posted!

Rachelle and Taylor

Hey Rachelle,

Its good to hear from you. Im glad that Taylors operation went well. I just want to remind you that we are all here to support you over the next year or so as i am sure there will be plently of challenges ahead! But regardless im sure that all will work out fine!

It's so sad to hear that Taylor isnt coping to well after her operation. She will get there remember that! she can only get better and now after the resident is on side and doing what mother knows best you may beable to relax a little and get your head around a bit of what been happening.

All the best over the coming weeks and please keep us posted!

Thanks Kylie!

Taylor is doing much better today. She was actually discharged last night from the hospital. She just wasn't doing well in an unfamiliar environment and the other baby that was in the room was crying off and on constantly. So, last night they sent us home with the pain meds and muscle relaxers and Taylor slept 12 hours although I got her up three times to change her diaper, positioning, and give her the medication. Now, she is sleeping again (her third two hour nap today). So, I am grateful that she is getting caught up on her sleep. She definitely needed it! She has been very frustrated and angry today and when she gets too overwhelmed that she can't get down and walk like normal, I think her brain shuts down and she just wants to sleep. I guess it's her body's way of healing itself and her way of dealing with it all. I know she will get better with time!

Thanks for all of your support ladies!!!

Rachelle and Taylor

P.S. How do you get a picture on the bottom of your messages?

Hi Kartier,

My bub is 6.5 months old and has been in the Spica for just over a month. She has been a great night sleeper since 2 months old and after being placed in the spica she does wake more often HOWEVER I don't think it is mainly due to this.

One night Summer woke 6 times crying her heart out and I was able to quickly settle her and she would go back to sleep. This happens on and off especially after I have put her down in the evening - she wakes about an hour later crying but then settles straight back to sleep. I wonder if she has muscle spasms after being asleep for a short period (although this does not happen during the day).

When they hit 6 months bubs go through developmental changes due to a whole range of factors like eating solids, growing teeth, reaching new milestones. My clinic nurse told me that Summer is probably getting frustrated because her body is telling her to do new things ie roll, crawl, sit up but her legs won't let her.

Your situation sounds far worse than mine (and I hope it has calmed a little since you sent your message) but I guess you just have to hope its a phase that will pass. To be crying constantly does indicate that something just aint right.

If it persists maybe try contacting your specialist/hospital care team to see if they have had experience with this. I don't think GPs really have the expertise in this area to identify a problem relating to the brace.

Hope that helps in some way.

Cheers, Karen

Hi Kartier,

My daughter is now 18 months old and wasn't in a cast or harness at 6 months, but right at about 6 months old she went from sleeping all the way through the night for 12 hours to waking up multiple times per night. Her pediatrician said that this was due to her development and teething, although I am sure your baby's harness isn't helping. My daughter had sleeping issues until she was 10 months old and then I just got to the point where I was so sleep deprived and couldn't handle getting up with her multiple times. I finally let her cry it out and stopped bringing her back to bed with me. I would go in to soothe her and it was the hardest 4 nights of my life and hers too probably, but at the end she learned how to put herself back to sleep and hasn't had any problems since. If you try this method, be sure to have a lot of support because it's almost impossible to not go pick up your baby when they're crying. This doesn't work for everyone and as long as your happy with the arrangement and don't mind this phase then just continue with what you're doing. She will grow out of it at some point! I hope this helps.

Rachelle

Hi,
Thanks for your support and help, it has helped us out in our current situation. DD had a few bad days where she just wouldnt sleep at all no matter what we did to help her it wasnt what she wanted or needed. Since then it has settled down and she has been checked out by her specialist and a new harness was fitted yesterday. Although her specialist seems to think it was not the harness but her development (ie teeth). DD has been a little better in sleeping at night but we are still having a few problems putting her to bed,we will keep at it.
BubbaGirl: Thanks for your help. We ended up seeing her doctor the next day and she was o.k. Her specialist thought that it may have been her brace and fitted her to a new one. Since then her sleeping has been o.k. It is strange as she will sleep during the day on time and for 2 hours a go,but when it comes to putting her to bed a night she gets so upset. We end up trying to settle her for an hour then we take her for a drive or a walk. It seems to have helped lately. I am sure it is just a phase DD is going through.
Rachelle: I took your advice and let her cry it out for a little while, but she went on and on for at least an hour. So we gave up and took her for a drive. I know that this will not last I will keep at it and will have some postive news soon
Thanks everyone
Kartier

First off, Kartier, I am glad to hear that your DD is doing a little better. The cry is out method is definitely the hardest emotionally. I think my DD cried for 90 minutes the first night and then she still woke up several times and it took her 30minutes each time to go back to sleep. I gave up quite a few times. It really is so hard to hear your baby crying and not respond. Finally after four months of it with my DD, I just got to the point where I couldn't handle it anymore and literally went out to my living room and put in ear plugs that made her crying not so loud. If your DD is teething, benadryl rubbed on her gums works well. It acts as a topical anethestic. Anyway, I hope things get better.

To all the ladies: Last night was a really hard night for us. My DD is SOOOO angry and is acting out agressively. I got up at 4 AM to change her position and diaper and give her the medication. She was screaming and trying to pull her spica cast off and saying "STOP! STOP!". I finally broke down and lost it and started crying right along with her. :( I feel so helpless! She was so out of control that I had to give her the relaxer/anti-anxiety meds, which I've been trying to stay away from, but she may need a little a few times a day just to get her through these three months. I just can't imagine what must be going through her head, to be a happy 18 month old toddler one day and wake up completely immobilized from the chest down (except her feet). Her anger and frustration is totally warranted I just don't know how to handle it when she gets so physical with me and starts slapping me in the face. I've tried her normal routine of holding onto her hands and telling her "No" firmly. I've also tried telling her that I know she is mad but she can't hit. Hitting hurts. None of it seems to be working and I know she's doing it out of anger because she is "stuck", as she calls it, in her cast. Any advice would be appreciated! :wall:

Rachelle and Taylor

Hey All,

How is everything going with your beautiful babies?

Azaliah is doing so well, i am so proud of her! She has taken it all in her stride and is acting like there is nothing attatched to her which is so good to see! We are going back to the Orth. Surgeon on the 8th of november and hopefully she will get to take her brace off!! The Doctor said that the two months will more than likely be more than enough for her as the joint is sitting perfectly together its just the cartlidge that needed to be a touch more rounded... Oh i have my hopes up big time but am also prepared for any dissapointment that might come my way.

Rachelle how is Taylor coping now? i hope she is doing better and has adjusted some more in this past week.

Thinking of you all!

Rachelle, I have tears rolling down my face. Your poor little girl. It's been a few days since your message - has she got any better? It really must be so frustrating for them. I'm sure with time she'll get used to it - but that doesn't help the now does it? Huge hugs to you. I really feel for you and wished I live near you to come around. :hug:

It's been ages since I've been on here and something must be wrong with my link to here - cause I haven't received any emails telling me that there were new messages on here. I just assumed it had been quiet on here and no one had posted any messages. And then I come on and there's pages! Grrrr:protest:

Karen, it's great to hear that Summer is getting better in her brace. Re: clothes - I too have been thinking the same getting ready for summer. I went into Kmart this week and they have little cotton leggins for girls. They're really cute. And seeing that they are cotton and 3/4 length they won't be as hot. I'm so praying that Sophie gets her brace off on her next visit on 27th Nov - she would have been in the brace (rhino) nearly 8 mths by then. We've had a few hot days here and it seems she has a permanent rash/mark around her legs and waist. How do the mums/bubs cope that live in hotter climates?

Kartier, we too had sleeping problems around the 6 month mark. I'd just got Sophie sleeping through the night and she had to go in the brace :( We had a week or so of shocking sleep once the brace went on - but after 2 weeks I got tough like Rachelle, I did the control crying thing and it only took a few nights for her to start sleeping through. My fear now is once they take the brace off she'll find it hard to sleep through. Has anyone continued to put the brace on their kids at night to sleep once they've been told it can come off? I suppose we'll cross that bridge when we come to it :D

Sophie is going well. Still bum scooting around and taking in the world. We've both had colds on and off lately - so that's put a damper on things. She's just started to pull herself up this last month on to her knees - even in the brace, but still shows no signs (even when the brace is off) of wanting to stand on her feet. In fact she cries when we put her on her feet. Still, not walking at 14mths has its advantages!!!

Anyway, just wanted to pop in and say Hi.
Take care ... hugs to those who need them!
love
Susan

Hi,
Just wanted to give you all an update on DD progress. We all had a rough few weeks. We went to see her specialist a few weeks ago to see if DD could have her harness off all together only to be told that her hips had not healed as fast as what the specialist had wanted. We were shattered at the news. DD was placed in a Rhino cast/harness, which restricts her movement more than the Pavlik Harness. DD hardly slept or ate for the first 3 days after the Rhino cast was placed on her. We have been told that she will be in this cast for 6 more months. I think we both cried hearing that as we were hoping that she would be free from the cast/harness by her first Christmas. It may seem selfish but I wanted DD first Christmas to be free from the harness so she could play. She will still enjoy her Christmas no matter what; just feel upset that she needs to be in the cast for another 6 months. I know that this is for the best for my DD but I know that as a mother I just wanted her to be happy and I know that she is starting to fight me and get frustrated which makes me upset. Not sure what else I can do to help her or us at this stage.
Rachelle- how is DD going? Has she started to settle down yet? Any update on what her specialist thinks?:cry:
Karen- how is summer going?
Suzet- My DD has just been fitted to the Rhino Cast and it has been rather hot at the moment. I have put cloth around her legs where the straps are. This helps stop the rash, hope this helps.

Hi All,

An update on Georgie. We saw our specialist yesterday which is 6 weeks since her Pavlik Harness has been fitted. We had good news, her left hips which was considered mild initially is now normal and her right hip which was considered severe is now mild (67% coverage). The specialist said another 6 weeks should be all that is needed. She can now be out of the harness for a few hours each day which means she can now have a bath again, which she (and us) thoroughly enjoyed last night.

Kartier, we are fortunate that Georgie will be able to celebrate her first Xmas without the harness.

To everyone I hope your little ones are coping ok and more importantly you are coping ok. It looks like our journey is going to be relatively short compared to many you.

Hi Kartier,

Sophie too is in the Rhino - she's been in it for nearly 7 months now. At first it was very restrictive - but over time the brace becomes very flexible and molds to their movement. The first week for us was a shocker with Sophie waking every half hour - now she won't sleep if she doesn't have the brace on! E.g. if she falls asleep in the car on the way home and I go to put her in the cot - she won't go back to sleep until I put the brace on her! It's become a bit of a security blanket (which worries me when she'll eventually have the brace off:D)

I'm sorry to hear that you have another 6mths with the brace. I always get my hopes up when we have our Orth. Surg. visit only to come out of the surgery nearly in tears. My last visit was on Sophie's 1st birthday and I was so hoping that he would tell us they we could be rid of the brace and give her the gift of freedom & 100% health for her birthday! You can imagine my disappointment when he said see you in 4 mths the brace is to remain on same as usual - so I know what you mean about Christmas! It'll all be over sooner than you know. Actually I really don't think much about Sophie being in the brace anymore - it's just part of our everyday routine. She too doesn't seem bothered by it. She scoots around on her bum, rolls over, pulls herself up - whilst she has the brace on. Actually the OS said he wouldn't be surprised if next time we come in she'll be walking in it. It's only a month til our visit and I don't see that happening - but it's good to know they are capable of doing anything that the other kids are doing! They're such little champions our kids. BTW - great idea about the cloth rather than having full length pants/leggins. I'll give that a go if it gets too hot - thankfully we're in Melbourne. Thanks. Hugs to you.

Bridee - that's fantastic news about Georgie. Congrats.

Anyway, I'm off to bed now. Chat soon. Susan xxx

Hi everyone,

Summer had her spica changed last Thurs and the xrays looked good. The spica will definatley come off in 5 weeks on Monday (3 Dec). She now has hot purple fibreglass instead of plaster and her legs are not positioned as wide as before. It isn't fun to see your baby go under anesthetic and come out at the end of it but it was a little easier this time. She actually woke on her way back from surgery and the nurse came to the waiting room asking for Summer's mummy with her crying in her arms. She settled pretty quickly.

Summer has been fitted for her brace and will go into that when she comes out of the spica. I can finally see a light at the end of the tunnel (well this bit anyway) and am starting to perpare myself for her to be in the brace for 6 months. My specialist initially said 3-6 months so will not set my sights of her coming out of it for her first birthday in March.

Kartier - my heart bleeds for you as I know how disappointed I was to learn that Summer needed the spica then brace for 6-9 months all up (when she was already nearly 6 months of age). Our bubs are also that bit older and we are seeing their development delayed which is the hardest thing of all. I'm sure you're like me in that you wonder what DD would be doing at this point and compare her to other babies at her age. Its a normal thing I guess. I know its hard to see now but when she is older you will look back and be glad that the problem was fixed. I do wonder why the treatment (ie. spica or brace and length of time) seems to be so different for all DD's. There just doesn't seem to be much consistency from people's stories. Hang in there and keep up the good work.

Susan - thanks for the tips on the clothing. I think I'll just wait to see what position her legs will be in etc. Summer will be in the brace until she's 1 or more which at this time is a little hard to accept when their development is so delayed. I am hoping that Summer will learn to roll again, crawl and maybe walk in the brace. What is the rhino brace?

Just wondering if anyone is being treated in Syd by Michael Bellemore (head of orthopaedics at Westmead). Might try and catch up on our next visit in Dec.

Does anyone have any experience of what to expect when DD goes from spica to brace (DB orthosis with waist and leg straps)? Also can anyone recommend a good high chair that works with the brace?

Keep on soldiering on everyone. Everyone seems to have their good and bad days which I think we would have anyway if they weren't in their spicas/braces. Our kids are very special and we all deserve a pat on the back for all the special care required.

Until next time...

my daughter is 15 days old and has hip diplaysia. we go to the orthopedest next week. im so nervous, all i can think is that somehow this is all my fault. i mean, she was inside of me and this happened to her! i wonder how will i be able to cuddle and love on her( not to mention breast feed her ) with a harness on her poor little body?

Hi All,

Its been a while since i have been in here. Sorry to hear Kartia that your bub had to go into the cast. I can feel your devistation.
Hope everyone else is ok.
Welcome to BB karalee. Its not your fault that your dd's hips dint develop properly. Thankfully it has been picked up very early and something can be done to help her. Good luck with the specialist appoingtment and let us know how it all goes.
Olivia is doing fine. We see the specialist in 3 weeks...today...I dont hold hopes anymore coz everytime i do I end up in tears, even though I know its for the best and everything we are doing is making things better.
Just a quick recap on us. Olivia is 7 months old today. Fitted with the Pavlik Harness at 5 weeks full time for 6 weeks; another 6 weeks but allowed off for 20 minutes a day; 8 weeks of 12 hours per day; another 8 weeks of 12 hours per day. We are up to the last part of the last 8 weeks. Olivia is rolling both ways, trying to sit on her own. Recently she has been able to pop her toes in her mouth. All I can say is that her development has certainly caught up very quickly since she has been brace free during the day.
Shes a clever monkey and can sometimes get herself out of the brace at night. She hates it going on, but it always means bedtime.
better run, my monkey keeps rolling onto her tummy and cracking it!!!
All the best
Love Melissa

Hi.

Melissa, all the best for today. Hope to hear good news! She sounds like she is doing so well. What a clever girl you have. We have our appointment on the 27th Nov - but like you I'm not getting my hopes up only to be disappointed again! Look forward to hearing from you.

Karalee - it's definitely not your fault nor anything you have done. I did the same - questioning myself, going through my pregnancy trying to figure out what I did etc. But it's definitely not our fault. It's fantastic that they picked it up so quickly - hopefully it means she won't be in the brace for long. I too breastfed Sophie in the brace. It took a bit of getting use to - but we eventually worked it out. Try different positions and pillows are handy to help prop up. Good luck.

Bubbagirl, you were asking what a Rhino brace Hip Kids Australia - Braces - Rhino Cruiser . I tried to attach some photos of Sophie in the brace - but I can't work out how to do it. There's some photos on our blogsite if you'd like to have a look at our beautiful girl (under August link). Also the website above shows the different braces. Summer sounds like she's doing well. The purple cast sounds cool!
Hope you're all well and bubs too.
Susan

Hello again Ladies!

Sorry it's taken me so long to respond to all of you. Taylor is doing so much better. I think that she actually was reacting poorly to her pain medication because once I took her off of it, she was back to being happy most of the time. She still gets frustrated, but it's been a couple of weeks since her surgery and she is now starting to pull herself on her stomach to go and get toys. She still pulls her hair when she gets really angry but I usually catch it before she gets too frustrated. She is also a really good talker so I am encouraging her to use her words instead of screaming. I have a bean bag chair which has worked great. I was also able to adapt one of those highchairs that straps on to the normal dining chair. I just had to unstitch the side and she sits in it perfectly up at the table. I also have a small stool that she sits on. I put it up against the wall and then her dad adapted an old coffee table and I am able to push that right up to her. I am finding it's the perfect spot for coloring, puzzles, books, and other activities. I also found that she fits in her stroller still, which is so much lighter than the wheelchair, so we are able to get out of the house and go for walks. Being that Taylor is 19 and 1/2 months old, with the cast on she weighs 30 pounds, so I am happy that the stroller works and that I don't have to carry her everywhere.

For those of you who have had babies in spica casts, what do you do to get the urine/ammonia smell out of them? Taylor's diaper has leaked a couple of times and I've used vinegar/water and then baby powder but it still smells badly of ammonia. Any suggestions would be appreciated.

KARALEE- Welcome to BB! You are in my prayers. I know how hard it must be as a new mom to hear that something is wrong. This is not your fault. When my DD was diagnosed at 18 months old, I thought the same thing: maybe I accidentally dislocated her hip when I was playing with her? Just know this is a developemental issue and there is nothing you could have done during pregnancy to prevent it. From what I've heard the risk factors are 1) first born child (because your uterus is a lot tighter and the babies don't have as much room) 2) Having a girl (because they have more of the hormone, Relaxin in their systems 3) Having a baby born breech. So, all this to say, you couldn't prevent this somehow. Don't blame yourself. Allow yourself to go through all of the emotions (you will be up and down) but it does get better!

KYLIE- Good luck with your ortho. visit on the 8th!

SUSAN- I hope that you and Sophie are feeling better.

KARTIER- Sorry to hear about your DD's visit to the specialist. I can't imagine how hard that must be for you, to think that you are at the end of the road only to be told that you have to deal with it for another 6 months. I'm sorry! You will be in my prayers.

DEE- Congrats on your good news from the specialist!

BUBBAGIRL- I am glad to hear that Summer's cast change went well.


Well, I'll talk to you all soon. Only 2 more weeks and then Taylor will get her first cast change. She'll go under anesthesia again but I anticipate it will be easier this time than it was for her surgery.

Take Care All!

Rachelle