Hip Diplaysia Support Group #3

[karalee]

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?

[minimatron]

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

[Suezt]

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

[Rachelle]

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

[bridee]

Karalee - Just wanted to reaffirm what others have said - it is not your fault. My daughter was discovered to have hip displacia at 6 weeks. She was put in a Pavlik Harness. Like you I was concerned about I would be able to cuddle her and hold her and breast feeding. Well I really did not need to be concerned. In terms of holding cuddling just minor adjustment but very easy, people have actually commented it is easier to hold her with the harness on than without (she's less flopping in the back with it on). What we missed the most was not being able to bath her but she surprised us and still loved the sponge bath we were giving her. In terms of breastfeeding, in the lead up to her being fitted with the harness I got a supply of expressed BM ready in case I had troubles and had to bottle feed her. In the end didn't need it I really did not need to change my position (she has always been a excellent feeder). If you have any questions PM. My journey with the harness has not been as long as some (has been fitted for 7 weeks and looks like will only be needed for another 5 weeks) but if I can assist would be happy to.

Melissa - Question for you, do you know the % of coverage Olivia has. Just interested as Olivia was fitted at about the same age as Georgie and followed a similar time frame 6 weeks full time and now up to time out of it (Dr said can be a couple hours a day). Dr said has probably after the next 6 weeks she won't need, having read your time frames I wonder whether it will really be the end.

[Kartier]

Hi everyone-
Firstly- Just wanted to say thanks for everyones support with DD and her recient situation,she is doing great now and it still smiling which makes us laugh and smile to.
karalee, I understand how you are feeling as I felt the same when my DD was placed into the Pavlik harness at 4 months of age. I was so upset and thought that I had done something wrong with her that may have caused it. I realised quickly that it was a common condition and is treated quickly. It is getting past the blame factor that is the hardest but you are not to blame at all. The question about how to cuddle her? Believe me any form of cuddling is all she needs. Being in the position she is in you will find what fits you both and will still enjoy her. My DD was put in a Pavlik harness at 4 months then into a Rhino Harness thereafter. In both cases I still managed to breastfeed her. It maybe uncomfortable for you but not for her as she molds to your body and how you hold her. Be patient as she wants to be near you and you will eventually find the right fit. It is amazing just how well they cope with the harness on. Keep your chin up as we have been through this and it will get better I promise that. It has been 3-4 months for me and I am able to give advice to other mums in your situation. You are doing great just remember that.

Rachelle- Glad to see that Taylor is doing well. keep up the great work.

BubbaGirl- Thanks for your support, it was hard to hear that she had to be placed into the Rhino Cast. We were hoping that she would be out of it by Christmas but she will be in it for a little while longer. It was heartbreaking. But I know that as long as she is happy and smiling then that is all I need in life. She is happy at the moment and has now produced 2 teeth so she is still developing as usual. We are pleased as punch.

[minimatron]

Hey bridee... I may sound pessimistic(sp?) coz when Olivia had her first scan at 2 days old, they said it was a mild case and would probably only need double nappies!! The scan 10 days later showed that her coverage was at 22% and the ball wasnt sitting in the cup. After the first 6 weeks in the harness full time, the coverage went to something like 47%, then after the following 6 weeks it was around 67%. The next 8 weeks with it on overnight showed that the hip was in place and the coverage was the same as the left hip (I think normal is 75%). The only problem is that the ball of the hip still needed to get more cartilage on it and become rounder iykwim. So thats the reason for the second lot of 8 weeks. The hip is stable though. I just wishthey had have been honest with us to start with. We now ask straight out questions like: whats the liklihood of surgery? They say unlikely. We asked that coz our physio said that usually bubs are in Pavlik harnesses for no more than 16 weeks. If they need intervention after that, then ususally surgery or a different type of harness is required. We wanted to know why shes been in the Pavlik for so long, as its no the usual thing....28 weeks all up. The specialist said to us that her hip is coming along fine and doing all the right things to make it better, but is not quite there and doesnt justify a different type of harness coz this is doing its job, just taking a little longer.
Sorry for the long winded explaination. Yes georgie sounds like Olivia in time frame respect. I think you just have to ask loads of questions, like what was the coverage to start with, what does it need to get to to be considered "normal" Whats the next step? You might be fortunate that Georgies hip is fine and she can come out of the harness, however theres always...it just needs a little longer...that one makes you cry!
Its so hard when you just want the best for your baby and you want them to be happy and comfy. Its also very challenging on us too. I always hated having to explain to people. Olivias my first baby and boy has this been an experience. I wouldnt change it for the world and if this is the worst thing that is wrong with her, then i am so thankful. I have such a beautiful happy girl. And if my next bub has the same thing....I hope not, but at least I will be prepared....although I dont know what its like to have a newborn whose legs look like a cooked chicken!lol.
Good luck everybody, big hugs to your bubs.
Love Melissa

[bridee]

Thanks Melissa for the explanation. Georgie's right hip is at 67% coverage and left 72% which has been deemed normal. It is interesting the different approaches. Your Dr allowed only night time usage when at 67% whereas ours has said all sleeps. Mind you we are only giving her 10-15 mins each time she is awake out of it plus bath time just coz it is easier (I find it a hassle to take the harness on and off given clothes need to come on and off). I figure it is not doing her any damage being it in during the day and perhaps can even ensure our best chance of getting her out of it completely within the next 6 weeks.

[~clover~]

Hi guys. I just want to give all you guys going through this some reassurance.
MIL was born with hip displaysia. She didn't get the harness or anything else she needed & at 42 has had her first hip replacement 2 1/2 years ago. She has had alot of probs & lives on pain killers.
BUT, Her 2 youngest also were born with it. SIL alot worse than BIL. They wore harnesses, SIL till around 9 months I think. & they are now 14 & 11 & are both active & sporty kids. SIL played every type of sport til she hit the teen years & puberty & decided it wasn't cool to play sports. BIL plays footy & rides bikes etc.
DD1 was born with 54% in here right & 45% in her left which is normal, so I got lucky coz it runs in the girls in DH's family & neither of mine had probs. SIL & BIL are half siblings & copped it from both sides.

So it is nothing you did while preggers it is genetic & if everything goes OK now they will be normal kids who can do whatever they want.

BTW Even with MIL huge probs & years in hospital she still gave birth 6 times naturally, so if any of you had it as babies & have had a doc tell you you can't. Don't necessarily listen. I know someone else who was born with it & told she wouldn't be able to have kids, so she didn't. Now she's met MIL she regrets listening.

[karalee]

kartier, thank you so much for the kind words. im glad to know that cuddling and breastfeeding at least wont be painful for her. appointment with the ortho is on wednesday, so im sure i'll be poting something that night. i just hope its good news instead of bad.

[becky]

HI everyone
My name is Rebecca and DD is 2 weeks old. I just have a quick question. When we were in the hospital, the paed said she could here some clicking in DD legs. She said she would arrange an x ray for 3 weeks to check if anything was wrong. (We have that Xray on Wednesday). I was just wondering how early your babies were diagnosed with hip dysplasia? I tend to think that if it were more urgent, wouldnt the paedeatrician have gotten my DD in for an xray straight away?

[bridee]

Becky - my daughter was diagnosed at 6 weeks. In the hospital the paed's said they throught her hips were fine but coz she was breech had a ultrasound at 6 weeks (this is rountine) it was then it was picked up. From what I understand (could be wrong) but as they grow it can get better itself so that is possible why he is leaving it for a few weeks. 5-6 weeks is still very early to pick it up. It is just when it is left months or even years that it gets harder to treat or should I say it takes longer to rectify.

[Rachelle]

Hi Becky,

My daughter was not actually diagnosed until she was 18 months old. From my understanding of this condition, sometimes when they are really young, it can resolve on its own it a few weeks which is probably why your pediatrician wants to wait for the x-ray. You wouldn't want a false positive diagnosis to treat a condition like hip dysplasia from them doing the x-ray too early. Hope that helps. You are very fortunate to get an early diagnosis if your DD does have this.

Rachelle

[becky]

Thanks guys
Is there any other warning signs that she might have it? For example, would she cry out in pain or anything out of the blue? We have her xray tomorrow, but I am just worried....

[BubbaGirl]

Hi Rochelle,

Of all the current entries, sounds like our bubs are the only one's in spica's, so we have the added challenge of trying to keep them as clean as possible without a proper bath.

This is the one thing I used to get the most anxious about, especially after Summer had a leak in her's before we'd even brought her home from the hospital (and it was of the brown variety).

Most people advised me to use sanitary pads but I found they were not wide enough and needed changing very frequently. With a little trial and error I have found the best nappy style to avoid leaks and the best way of cleaning the area.

I use a normal size nappy for summer's weight (crawler) and feed that into the spica so it is placed on her like a normal nappy. (I do remove the tabs first). I also place it in reverse so that the front part of the nappy absorbs more of the urine from her lying on her back so much of the time. Then I fold up nappy liners into a snake shape and tuck them into the sides so they catch any leaks coming out of the nappy which is very rare if she is changed often enough. This has been almost foolproof and I was surprised how clean the area was after 6 weeks.

In terms of keeping clean, I use a product called Newways which is chemical free. I use the bubblebath in warm water and wipe over all the skin and tape that I can get to and let it air dry. I also dribble the water from wet cotton balls over her private parts to remove any smells.

Its very important to take the nappy off a couple times a day and just let the air absorb the moisture and any smells. (You need to place some towelling underneath and tucked in to avoid soiling and sit with Taylor so you don't get any nasty surprises). I find sweat smells more than anything else so its important to not let her get too warm.

I have also used some eucalyptus oil dapped on the inside of the taped area which helps absorb smells (or at least cover them up). Also find cornflour is good as a power to absorb moisture and absorb smells.

Hope some of that helps.

You are coping so well - once you get into a new routine it is so much easier on everyone.

I found the change of spica much easier that the first -shorter recovery etc etc although Summer's legs have been brought in closer and this spica seems much tighter around her body than the last. I have 3.5 weeks to go and cannot wait to get rid of this horrid thing (as well as all the time consuming changing that goes with it.

Chat soon.

Karen and Summer Rose

[BubbaGirl]

Hi Becky,

My DD did not have clicky hips or any pain associated with her displayisa. Signs for her were uneven skin fold in the legs and one hip higher than the other (appearance of shorter leg) but these signs were very slight. She was not diagnosed until 6 months.

Whatever happens tomorrow just be confident that with an early diagnosis it is 95% curable.

Good luck and stay strong for your little one

Karen

[Rachelle]

Well, Taylor has been doing well in her cast but developed a case of the stomach flu yesterday morning. The diarrhea leaked into her cast. I tried to clean it as best I could with Vinegar and Water and then dried it with a hair dryer but it still smells horribly and we have one more week until her cast change.

Becky-The orthopedic surgeon that we saw told us that since babies are born with hip dysplasia, that they don't have any pain with it. As far as some of the symptoms besides clicky hips, uneven skin folds around the buttocks, uneven leg lengths and when you put their knees together (with feet flat) then one knee may look higher than the other. Hope that helps and that your x-ray goes well.

Karen-Thanks for all the spica advice. I have found an almost foolproof way too, to keep Taylor from leaking. I use slightly smaller diapers during the day since they are easier to tuck up inside the cast. I also put her to sleep on a foam wedge so that her urine will run down into the diaper instead of back into her cast. At night I use a diaper doubler and then before I go to bed, I change just the doubler which she sleeps through. This way we both get a full nights sleep since I don't wake her up at night to change her diaper. Now that Taylor has a stomach bug and the diarrhea leaked into the cast, I really don't know what else to do about the smell. I think I will get some baking soda today and try that along with some lavender oil. It does smell really bad but luckily we have one more week to go and then she will be in a new cast. The hospital has also given me rolls of moleskin. It's really soft on one side and adhesive on the other. I put it along the rought edges of the cast but have also found that it works well for a barrier when I put it in the back of the cast. That way if she leaks onto the moleskin, I can just change it and the cast doesn't get soiled. I think her second cast will be much cleaner now that I have all these tricks and have found what works for us.

Take care and hang in there!

Rachelle and Taylor

[becky]

Hi all
We had our xray today, and the Dr said her left leg is fine, but her right leg definately has some clicking, and that there is a bit of a hollow in the hip joint. She said it was nothing really major, but I would have to discuss what to do next with my GP. (We now have an appointment with her next Wednesday).
Grrrr, Im worried now. I dont know what thats supposed to mean.