Hip Dysplasia

Hi Everyone,

I am new here too. Our little girl is also in the pavlik harness and has been for 4 weeks on monday, she was not breech so there is real explanation as to the cause of her hip problems. We were lucky that it was picked up when she was four days old. She did not get the harness on till she was 5 weeks as they wouldn't u/s her until she was 4 weeks old. We only bath her once a week at the hospital we cannot remove the harness at all, we just sponge bath her daily. We are working in six week blocks so only a couple more weeks till her next u/s, at this stage our paed thinks she will have it on for at least 12 weeks but we just have to wait and see.

I'm glad I found this forum/thread there is not much out there about what 'real people' go through with this.

Its great to read a few of your babies are getting to the end of their tretment with good results and are now out of there harnesess'/casts :D

Steffy

Hi there,

I have been reading your posts - I took my 8mo dd to the doctor this morning as one of the girls at childcare noticed she has one leg longer than the other. When I was looking at her last night, it seems so obvious and I can't believe I didn't see it before. Anyway, the doctor confirmed there is definitely something wrong with her right hip and suspects dysplasia.

I can't stop crying - I've been reading all the various treatments and they all sound awful. She is already so active - crawling and following her older brother around, and I can't bear to think this is going to come to a halt very soon. We are seeing the specialist next week so will find out more I guess, but I wondered if there were any questions we should particularly ask? I know I'm just going to be in tears the whole time and won't take anything in.

What are the treatment options? I keep reading about all the braces and casts and they all sound horrible, especially the spica cast!

Thanks,
Bertie

Hi Lesa,

Hope you and your little one are doing well.

Yes my baby girl (Sienna) wears the harness 24/7 and sounds like we bathe her like you do your little one. I was concerned that we weren't able to clean her bottom etc. adequately by sponge bathing, so we bought a 'hose' that connects to the bathroom tap to wash those areas (which works really well without getting the harness wet).

We are seeing a hip specialist on Monday, so I'm hoping he will tell us more about the severity of Sienna's condition and also perhaps give an indication of how long the harness might be needed. The only indication we have so far is the Dr who did the initial ultrasound indicated Sienna's condition wasn't 'that bad' and could only tell us that most babies wear the harness for approx. 12 weeks. Our paediatrician didn't comment on the severity of the condition at all (which I can understand) and referred us to the hip specialist.

Good to hear your little one's hips are improving with the harness.

Take care,

Natalie

Hi Lesa,

Hope you and your little one are doing well.

Yep my baby girl wears the harness 24/7 and it sounds like we bathe her as you do your little one. We ended up buying a hose that fits onto the tap to wash her bottom etc (without getting the harness wet). Not really sure of the severity of Sienna's condition just yet...we have an appoint. with a ortho surgeon this coming Monday. All we've got to go by is the Dr who performed the initial ultrasound indicated Sienna's condition isn't too bad, so I'm keen to hear the 'hip specialist' opinion. And I'll be armed with questions this time, as I was in shock and too emotional to think after the ultrasound/ harness was fitted.

Sienna has had the harness on for three weeks now and we had a routine appoint. the day before yesterday with the orthotist who fitted the harness...the positive news is he was happy with the harness (loosened the straps on the left leg a little...hooray!) and also said the ortho surgeon might want Sienna to go into a different type of harness/brace, so I'm keen to find out more next week.

Take care,

Natalie

Hi Lesa,

I've tried to reply three times now and for some reason the forum is not saving my posts :(

Hope you and your little one are doing well.

We had our first appointment yesterday with an orthopedic surgeon who reviewed Sienna's ultrasound films and manually felt her hips. He believes her left hip would have been dislocating at the time she had the harness fitted (3 weeks ago) and the good news is he could not feel it dislocating yesterday (yay....some progress!!). We are having another ultrasound tomorrow to ensure the hip is being held in the correct place by the harness and if all looks ok we continue on and have another ultrasound done in 4 weeks time and see him again in 4 weeks. He believes Sienna will have the harness on for 3 months.

Yes Sienna wears the harness 24/ 7 and it sounds as though we bathe her as you do your little one. A tad frustrating doing the whole sponge bath thing...how exciting it will be when the harness comes off and we are able to give a proper bath! We bought a hose that attaches to the tap in the bathroom sink which makes it easier to clean her bottom etc without getting the harness wet.

Take care and chat soon.

Natalie

Hi Natalie...

Glad to hear you have some progress being made!

Isn't this ridiculous what our babies have to go through! But I look at it this way... she is perfect and healthy in all ways but just has to get past this one little obstacle. And things could have been way worse. At least this problem is fixable!

We had our third ultrasound yesterday. Baby has had the Pavlik harness on for 6 weeks. Yesterday we took it off and the doctor put on an abduction brace. He said she will wear this for 3 months. She had the Pavlik on for 6 weeks. The only good thing about it is that I get to see her little feet and calves that I havn't seen since she was 2 weeks old. This brace is hard foam, plastic and velcro straps. It has to be removed for all diaper changes but has to be kept on 24/7. So as soon as the diaper is changed it goes back on. It only goes around her belly and legs. It's difficult to put back on. She can't fit in her carseat/stroller, her swing or her bouncey seat or basinette...that is bad!!! Anyways I guess traveling with her will be kept to a minimum since I would have to remove the brace to travel with her...and it's to be kept on at all times.

Doctor said that her hips were really bad. He told me that this ultrasound showed that her hips were securely in their sockets...so I asked him if this meant that she wouldn't have to have surgery or be put in a body (spica) cast and he couldn't tell me "No". So now I am upset because i thought since the hips were in the sockets that this brace would be the end of it.

I just want my baby back to normal so I can hold her normally, bathe her normally and she can wear all the pretty clothes that she has.....which I'm sure I will have tons and tons of clothes to give away that still have tags on them. I want her to be able to roll over, crawl, etc, etc.

Anyways, sorry for rattling on and on. Keep me updated on your little girls situation and I will keep you updated on mine. We have to go for an X-ray in 4 weeks. I am praying for the best! :pray:

lesa

Hi everyone, My name is Sharon and I have a 10yo daughter Jordyn who was diagnosed with hip dysplasia when she was 14months old. She is still experiencing problems. Like many of you I have cried bucket loads of tears and gone through exactly what you are all talking about, hip spica, braces etc. I would really interested in talking to anyone who has an older child going through operations in the hope of correcting her hip. I really wish I had found a site like this years ago!!!!!
Sharon

Hi Sharon,

I was sad when I read your post! Back when she was diagnosed how long did she go through treatments? What all did they do back then to help her and did they say that everything was corrected when her treatments were done or has she been having problems ever since? Sorry for all the questions but just wanted to hear more about your little girls ordeal. Poor thing, I hope she isn't in pain.

Our baby was just taken from the Pavlik harness and put into an abduction brace and my baby's dad was just saying this morning that he hopes she doesn't still have problems when she gets older and I told him that's why we are going through all of this now so that she doesn't have problems down the road and now I read your post about your daughter. I didn't think this whole hip dysplasia was so difficult to correct...

Well I hope things get better for you and sorry I couldn't give you any support on having to deal with this in an older child. MIne is only 8 weeks old so it is just the beginning for us.

Good luck and keep posting........

Lesa

Steffy,

How is progress going for you? I just read your post. Did your little one go for the next ultrasound yet? If so what did it show??

Mine just had one 2 days ago and the dr. said her hips had been REALLY bad but they are in their sockets now. She had the Pavlik harness on for 6 weeks but got it off after the u/s and is now in the abduction brace which he said has to be on for approx. 3 months. He also couldn't rule out surgery and spica cast (my worst fear). I hope yours gets corrected with just the harness because this brace is difficult and she can't fit in her car seat or anything.

Keep us posted!! Hope all goes well!!!!

Lesa

Hi Bertie,

Just read your post. I am sorry to hear about your little one. Just rest assured that things will get better. At least they found it now and not when she was older. There are so many different treatments for this... She may just have to wear a brace for a while to put the hip back where it should be... babies can even walk in some of these. It may take a few months to get that hip where it should be but like I said at least she is only 8 mos. old.

I am terrified by that spica cast thing as well!! But from all that I have read it seems as though children adjust well and cope with it rather well. Just do all the research that you can on this so that when the time comes you will be prepared by whatever route the doctor chooses to take to correct the problem.

I only know of the Pavlik harness, the abduction brace, surgery then spica cast also I have read about traction. Do your research and be prepared. I feel your pain and your fears.... it's hard I know but keep posting so that you can get support from everyone.

Good luck!!!!!! It will get better........

lesa

Hi Lesa, It was really good to hear from you and ask me any questions you want,that goes for everyone out there. Jordyn wasnt diagnosed till she was 14months and she had surgery to put the bone back into place and was in a hip spica for 8 weeks. She learnt to stand, flip herself over and crawled so much that the plaster on the knees started to wear out. She was then in a brace for many months. Everything was really good until she was 4 and they discovered that the socket wasnt covering the ball joint enough so she had corrective surgery and was in a wheelchair for 6 weeks. At 7 they discovered that the leg bone was growing too long and pushing the hip up and did more surgery, again wwheelchair for 6 weeks and then crutches for 6 weeks. They inserted pins anda plate to stop the bone growing and give the other leg a chance to catch up. She had the pins out 2007 and by xmas that year i could see the same thing happening again. She had more surgery July last year, more pins and plate, w/chair, crutches. She is due to have it all out later this year and hopefully it wont happen again. Please Please understand what has happened to Jordyn is in the minority, we were told these things could happen and unfortunately they did. It has been extremely tough on her but her strength and courage has astounded me. She will keep having to go back to the Childrens Hosp till she finishes growing. Her one thing she has a problem with is she has never met another child with a similiar problem in her age group. Lesa stay positive, like I said our situation is not usual with hip dysplasia. Sharon

Hi Bertie, Just read your post and I understand exactly what your saying. The best advice I can give you is write down your questions and take them with you to the doctors visit. Also if someone else can go with you who can talk to the doctor if you cant and ask what you want to know. Your baby will adjust, Jordyn had been walking when she had her first operation and adapted fine. LIke I said to Lesa she learnt to crawl etc.
You can still give your a baby a cuddle and play with her, I found the worst thing was how heavy she was to carry around. Good luck and I am thinking of you Sharon

Hi Lesa,

I'm sorry to hear you are almost 'housebound' for 3 months with the new brace on. Is there somewhere you can hire a car seat or pram from that your baby girl will fit into with the brace? Would be nice if you could lead some sort of 'normal' life, or it might be hard to remain positive (it's hard enough knowing our babies are in a harness let alone being housebound!).

I feel your pain and worry about having to face surgery or different types of braces in the future; like you I thought the pavlik harness would fix the problem. Until I read Sharon's posts.

I completely relate to your feelings of simply wanting your baby back to normal so you can hold & bathe her and dress her in all kinds of different clothing. Sienna also has a wardrobe full of gorgeous girly things which she cannot wear. But just think, after all this is over with and our girls are doing really well, we will forget about all the difficulties we faced with this issue :)

Chat again soon,

Natalie

Hi Sharon,

After reading your posts I just wanted to let you know I feel for you and Jordyn...what an ordeal! I didn't think that so much surgery and treatment would be needed to fix a child's hip. It must be difficult (and exhausting) to see your little girl go through all this. I'm sorry I don't know anyone in a similar situation as you...it would be nice if you and Jordyn had others you could chat to about it all.

I really hope that when the pins come out later this year that Jordyn's hip is fixed and you don't have to face this all over again.

Take care,

Natalie

HI Natalie,

It was really good to hear from you. Yeah I have cried lots of tears but there have been just as many good times in between the surgeries. Jordyn as amazed me with her
attitude she wants to write an essay about her experience with all of this for school, which for her is a positive step. Last years op hit her hard and I can think finally the
acceptance is happening, before that i think she was too young to really understand the whole situation.
I wasnt trying to scare anyone with Jordyn's story and I am sorry if i did.
Good luck with everything and I would like to know how it all turns out, keep smiling, take care
Sharon

Hi every one,

WOW - how time flies, I didn't realise that last time I posted was just after Easter! There are a few new posters - welcome -

Sharonw its great to chat to someone who has 'been through it all' even though your journey hasn't ended I'm sure you can offer some great advise and tips. Jordyn sounds like a trouper, it is surprising how well kids adapt. Hudson does even seem to care that he is in a spica cast, he plays on the floor with his trains. He wore through his last cast like Jordyn did (we got told off) so this one we got more fibreglass added after a week but he's still wearing through this one too.. oh well

My son just turned 2 on Friday, he has been in his 2nd spica cast for 3 weeks now. His first one was on for 6 weeks. We get this one off in 3 weeks and he'll get measured for a Bachelor Brace - which I have no idea what it is as I can't find images of it on the net. I imagine Forrest Gump lol. Then he will be in another cast for 2 weeks while the brace is made then will be fitted with the brace. From what little they can tell me he will be in it 24/7 with an hour off a day for a bath (can't wait to bath my boy properly). They may allow Hudson to take it off for longer as time goes on but they can't promise anything.

Lesa - i can totally understand about the not fitting into anything. We had to hire a car seat and had that modified to support his back. We had to have an extra large wooden thing attached to his pram to support his legs, we had to break the front bar off the pram to be able to get him in. Hudson wouldn't fit into a high chair with his first cast at all, this one isn't as wide so we can fit him in his high chair now.. just.

Things I was surprised with...
- that Hudson never cried.. once :clap:
- Hudson could commando crawl instantly
- how heavy he was
- how much ppl stare and how many comment that they have been thru the same
- that they saw the cast off while he's awake, he did shed a couple of tears but was fine after he could see what they were doing
- how hard it is to feed a child that can't sit in a high chair and cant sit on your lap

Sorry its a bit of a novel, I just have so much to say =]

Hello All,

Sorry it has been a week or so since I posted... also, there seem to be 2 hip dysplasia threads (both of which I have posted to at different times) - is there any way we can get the two combined?

Well, update for us - we went to see the specialist last week and had everything confirmed - nothing unexpected. Olivia will have her leg/hip pushed back into place (he is hoping to avoid surgery) and then will go into a Spica cast for 12 weeks. He was hopeful that will do the job, but will reassess at the end whether she would need a brace for a while after, although he did say that if she did it would just be over night.

Unfortunately she is not scheduled to have everything done until 22nd June, which means another 2.5 weeks of waiting. I feel like it has lulled us into a false sense of security, as everything is back to normal, I'm not feeling sad as 2.5 weeks seems like AGES to enjoy my beautiful little girl being active and happy. I kind of wish we could just get on with it though - I think the anticipation is the worst thing!

I have some practical questions though:
- in the spica cast, what position will she be in? Is she ramrod straight, or sitting or in between (reclining)?
- I read that children in spica casts were ok in bugaboo strollers and stokke high chairs (both of which we are lucky to have from my elder child) - has anyone had experience with either of these? What prams were you able to use?
- Re changing nappies - where / on what did you change them? I don't think Olivia will fit on our change table when she's in her cast.
- What should she sleep in? Will she fit in her sleeping bag? Or even if she does, would it be too hot for her in the cast too (2.5 tog)?
- My specialist said it was a completely painless procedure, but I have read that they get muscle spasms and cramps etc, which I don't think sound painless! Did your children get these and how did you deal with them?

Sorry for all the questions - and I'm sure I'll have more later!!!!
Hope all your beautiful babies / children are doing well...

Bertie

Hi Bertie,

Thought I could answer a few of your questions. My boy Hudson is in a Spica Cast - the term was for 12 weeks with a change over half way through. I will imagine they will do the same for you, it allows for growth and p`ulus by the end of 6 weeks its starts to smell a bit.
We will have to have the brace as well, but we have been told it will be on for most of the day - but Hudson is a little older than your girl.

In terms of what will he cast be like... well there is no definate answer, this 2nd cast was different from the first. They say it all depends on how the hip will sit, that is how the cast will go. Hudsons first one was ver wide and his legs were bent and there was a bar between the ankles. The cast went from just below the rib cage to his toes.

The second cast isn't as bad, its not as wide and his feet are free, there is still a bar between his legs though. There was a little girl about 1 - 1 1/2 getting a cast at the same time, hers was only down half one leg and one full leg to her toes and then up to her rib cage, there was no bar on hers.

See my previous post about car seats, prams and highchairs.

We have no problem changing nappies. We have one of those foam change mats from Target and he fits on that fine. With nappies we use a new born one tucked into the cast and a larger one for the outside to hold the smaller one there and to catch overflow. (got that tip from someone here) we use huggies newborns and baby love on the outside. We only change the outside one twice a dy o average but will change the newborn one every 3 hrs or so. We don't wake him to change him at night and he will wet through to the big nappy.

Hudson sleeps normally in his cot with a pillow to support his legs. We dress him in a all in one suit with no legs as he tries to take his nappy off. We dress him in t-shirts or jumpers over that. Being a girl you could use dresses.

when the first cast as put on Hudson was quite dopped up with morphine, this was due to them having to 'nick' the tendon to manipulate the leg so the hip joint was in place. he was quite bruisesd and tender in this area for a good month but would only cry "ouch" when we tucked his nappy into his cast. Other than that he wasn't in any pain.

I think if you do a lot of research and look up pics of spica casts you won't be as shocked.. this is what we did and I have yet to shed a tear as I think we were quite prepared for it - good luck with it all and feel free to ask as many questions as you like

Lizy