Hip dysplisia

brokensoul

My daughter has been diagnosed with hip dysplisia. She will need to have manipulation under general anesthetic to put the hip joint into the socket and thereafter she will be in a cast for 12 weeks.

I am making my peace with the idea of the surgery, though I hate the notion of her having a general anesthetic but I am completely freaked out at the notion of her being in a cat for 12 weeks.

Has anyone had experience of this? How do you manage car seats, buggies, sleeping etc?

Ms. Chanandler Bong

You'll be amazed how quickly she adjusts! Mine had a scan at 5 weeks (we were told at birth that she had a high risk for it - first born, girl, breech birth). The worst part was the hour it was taken off at the weekly physio check-up, they have to check the hip measurements to ensure the angle of the hip isn't outside the desired range & the straps adjusted accordingly. We had a Pavlik harness (the one with the band around the chest and straps that run from over the shoulders down to stirrups on the feet). You don't say how old your LO is. The first few nights, I slept with her on my chest as it was most comfortable for her to keep her legs like that. After that, she slept away herself no bother.
She fit in the car seat ok at the time, the harness did allow a *slight* bit of movement though.
I did a lot of baby wearing as the slings/carriers/wraps actually promote good hip placement. Have a look for Babywearing Ireland on Facebook to find a local group that can help you with finding a carrier that suits you.
In terms of clothes, we were using 6-9 month clothes when she was 6 weeks! Mostly babygros, don't expect to fasten all the poppers We used cushions to help pop her up when we were sitting her up, she was more of an inclined lying than sitting.
We were told Day 1 that she'd have an x-ray/ultrasound after 4, 8 & 12 weeks but with the Health service the way it is (only one paediatric ultrasound tech in our hospital & she was on hols when the 4 week scan was due!). Had a scan at 8 weeks & got the harness off that day as scans were good. Had to wear it overnight for another 4 weeks though, putting it back on that first night led to so many tears!!!
Something to watch for over the weeks is flat head syndrome. Because the baby is forced to sleep in one position, they're more prone to it. We bought the clevamama cot & pram pillows & turned seats/alternated arms for holding etc to get her to lie on different spots but she's still ended up with a bit of a flat spot though. This is in part due to an unrelated medical issue though and the physio is happy enough that it'll resolve itself. She did mention using a sleep cushion like this:
http://www.clevamama.com/bedtime/clevasleep.html
or have a search for baby bean bag. If you've any questions, PM me

Vel

Check out this thread for lots of invaluable advice

http://www.boards.ie/vbulletin/showthread.php?p=67767648

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Our little one had her Pavlik harness fitted a day 3 and had if taken off at 6 weeks. It was a pain, but in hindsight, wonderful what could be achieved.

Six years on, last weekend she was the proudest little girl with her Level 2 gymnastics medal

OP, it's horrible for now, but you will look back on this in time and realise that it's lucky it's something that could be dealt with definitively.

Ms. Chanandler Bong

In retrospect, the poonamis (what a wonderful word!!!) were horrific but like everything else, you deal with it and move on She had two while in the harness and i couldn't remove the harness to clean it properly so I was trying to clean it as best I could with wipes and using a hairdryer on a low-heat setting to try and dry it a bit faster!!

brokensoul

Thanks a million lads. My LO is just coming up 5 months so will probably be 6 months when they do it. It will be a closed reduction procedure and she will be in a cast rather than a harness ( I think)

She was 5 weeks premature and has some reflux and discomfort when trying to poo so dealing with that and a cast is going to be great fun!! Still, if we made it through the first 12 weeks with twins we can make it through this!

Ms. Chanandler Bong

brokensoul wrote: »

Thanks a million lads. My LO is just coming up 5 months so will probably be 6 months when they do it. It will be a closed reduction procedure and she will be in a cast rather than a harness ( I think)

She was 5 weeks premature and has some reflux and discomfort when trying to poo so dealing with that and a cast is going to be great fun!! Still, if we made it through the first 12 weeks with twins we can make it through this!

We have pillows under the top of the cot mattress to help with reflux. Our LO's isn't the worst though thank God. The baby-wearing did help as she was upright a lot more than lying down.
She's 6 months out of it and you'd never know it had ever happened, she's crawling backwards & shimmying forwards on her bum, loves standing and bouncing on your knee, like pretty much every other baby Don't be thinking it'll affect her development or hold her back, you'll find she muddles along just fine! It definitely bothers us more than them!!! :pac:
One thing I found was the amount of people who knew someone that had a cast (or the double cloth nappy in older days!) is crazy! Including a friend of mine who knew never knew she had it until her mum told me!

brokensoul

Ms. Chanandler Bong wrote: »

We have pillows under the top of the cot mattress to help with reflux. Our LO's isn't the worst though thank God. The baby-wearing did help as she was upright a lot more than lying down.
She's 6 months out of it and you'd never know it had ever happened, she's crawling backwards & shimmying forwards on her bum, loves standing and bouncing on your knee, like pretty much every other baby Don't be thinking it'll affect her development or hold her back, you'll find she muddles along just fine! It definitely bothers us more than them!!! :pac:
One thing I found was the amount of people who knew someone that had a cast (or the double cloth nappy in older days!) is crazy! Including a friend of mine who knew never knew she had it until her mum told me!

That is really reassuring to hear, thanks so much for taking the time to post.

We got her op date this morning, 6th of January. Nice to have a date, also terrifying!

ShaShaBear

It's a curse when you find out. Our little girl was diagnosed at birth, had to wear the Pavlik for 12 weeks (because the local clinic they had us go to were putting it on wrong after refittings and her hip got worse) and then had to wear the huge plastic brace for another 12 weeks. We're waiting on an appointment to go back and have a check-up but the surgery was mentioned to us too as she has a shallow hip socket
She's cruising now at 1 year old and crawling confidently. Although as was said earlier, I wish someone had the wit to warn me about flat head syndrome :mad:

Ms. Chanandler Bong

ShaShaBear wrote: »

It's a curse when you find out. Our little girl was diagnosed at birth, had to wear the Pavlik for 12 weeks (because the local clinic they had us go to were putting it on wrong after refittings and her hip got worse) and then had to wear the huge plastic brace for another 12 weeks. We're waiting on an appointment to go back and have a check-up but the surgery was mentioned to us too as she has a shallow hip socket
She's cruising now at 1 year old and crawling confidently. Although as was said earlier, I wish someone had the wit to warn me about flat head syndrome :mad:

:eek: that's so crap about having to wear the brace for an extra 12 weeks!! We were blessed with a fantastic physio in the hospital who told us what we needed to be doing (including hassling the hospital x-ray department about the fact that we hadn't got a 4-week scan appointment then telling us who to call to put pressure on them to give us an appointment!) She showed us all kinds of exercises to do to try & prevent the flat head that nearly always happens (her words). I remember saying at the time that if the HSE had a couple of people like her running the whole shebang, we'd have a healthcare system that was the envy of the world lol
BTW, ways to prevent Flat Head: Lots of tummy time, also try to move their head while they're sleeping (good luck with that one!), move their chair so they have to move their head. Prop your foot on your other knee & sit the baby so he/she is leaning across your top leg. Basically get the baby sitting up with no pressure on the skull for a few minutes at a time throughout the day. And if it still happens, just remember that it'll usually resolve itself by the time they're 2.

ShaShaBear

Ms. Chanandler Bong wrote: »

:eek: that's so crap about having to wear the brace for an extra 12 weeks!! We were blessed with a fantastic physio in the hospital who told us what we needed to be doing (including hassling the hospital x-ray department about the fact that we hadn't got a 4-week scan appointment then telling us who to call to put pressure on them to give us an appointment!) She showed us all kinds of exercises to do to try & prevent the flat head that nearly always happens (her words). I remember saying at the time that if the HSE had a couple of people like her running the whole shebang, we'd have a healthcare system that was the envy of the world lol
BTW, ways to prevent Flat Head: Lots of tummy time, also try to move their head while they're sleeping (good luck with that one!), move their chair so they have to move their head. Prop your foot on your other knee & sit the baby so he/she is leaning across your top leg. Basically get the baby sitting up with no pressure on the skull for a few minutes at a time throughout the day. And if it still happens, just remember that it'll usually resolve itself by the time they're 2.

She's upright apart from her miserly amount of sleep now at 1 years. Yeah, the physio we went to was terrible. Turns out she was putting the wrong sized harness on far too loose and her first month or so in it was 100% worthless. Ended up having to travel from Monaghan to Temple Street weekly to get it done right! Different kettle of fish up there altogether - you may be waiting a day to get seen, but they know their stuff!
Her hair's growing out now anyway, so it's barely noticeable but I love her to bits, wonky head and all

brokensoul

So my little girl had her surgery yesterday. If it is ok with mods I thought I might give a description of how it went. Feel free to delete if it's not ok.

We had to be into hospital at 7.30. She was fasting from midnight the night before, but she usually sleeps through the night without a feed anyway so that was ok. Once we got in they weighted her and checked her vitals and she was cleared for surgery. We brought her down to theatre at 9.15, the surgeon and anesthetist came out and spoke to us and then we handed her over to them. That was really really hard but the staff there were lovely.

The surgery took an hour and they rang us to come back down to theatre to her once she woke. She was in quite a bit of pain at that stage. She had a closed reduction procedure and a tendonetomy. We gave her some food and she got a bit more pain relief and then fell asleep in my arms. Once they were happy with her vitals we were moved back up to the ward. We had to stay there for 4 hours so that they could keep an eye on her and show us how to change the nappy and all that. We finally got discharged at 6 ish and got home.

The little girl loves her cast, which we couldn't have predicted!! It makes a thumping sounds when she hits her hand off it and this seems to please her no end. Just goes to show how resilient smallies are. All in all, it isn't as bad as I thought it would be. She doesn't seem to be in pain and because she is small, even with the weight of the cast it isn't too hard to carry her around or change her.

The next few days now will all be about working out logistics. We hired a special car seat from maxi cosi online (£100 to rent, £50 returned when it is returned to them) and she fits into her seat at home, so we need now to figure out buggies and stuff like that.

Might throw up another post in a few weeks about what we have found works and doesn't work but so far it has been far more managable than I feared.

scarepanda

Brokensoul, I'm delighted to hear that the procedure went well for her. Here's hoping she goes from strength to strength from here on out and doesn't have any other issues. It sounds like she's a tough little cookie!

brokensoul

Just updating this (again, hope it is ok with mods to bump the post)

So my little girl was in yesterday to have her hip cast changed. Procedure was exactly the same as the last time, in at 7.30 then general anesthetic and cast change. She was very tired after the GA but had no pain. Thankfully the hip is in place and the cartilage is growing around it so she will have another 6 weeks in the cast and then will be back to outpatients to have the cast off and be fitted with an abduction brace.

All in all I have found the last 6 weeks more manageable than I feared it would be. Firstly, I would highly recommend the maxi cosi car seat. I couldn't imagine her fitting into any normal car seat and once you get used to it, tis easy to use. It is a little limiting that you can't take it out of the car so you don't have a seat to use if you are taking her out and about.

In general I would recommend not buying anything until the cast is on as you would be surprised how much of your existing stuff you can adapt. Our little one still fits into her buggy (thank god!) and in her high chair. As for things we have found useful, I have found that a v shaped pillow really useful to shape around her for tummy time. Another thing we found very handy were these vest extenders http://www.fluffybums.ie/vest-extenders . They mean that you can keep using normal size vests and the extender should allow them to tie under the cast.

Hopefully the next 6 weeks will go as well as the last 6 and i will update again once she is in the brace.

brokensoul

Another (nearly) 7 weeks on and she is out of her cast!!

Into a brace today. She has to stay in it 23 hours a day which basically means that she can be out of it for baths and changing but not apart from that. Back in 6 weeks and she may be able to progress to only wearing it at night at that stage.

Consultant happy with her progress. Even with this, however, there is apparently a 50/50 chance with a closed reduction procedure that it will require further surgery down the road. The consultant did say however that the earlier the baby is diagnosed the better the chance of not needing surgery so fingers crossed.

The actual procedure of cast removal was quite traumatic for her. They use a saw to cut it and the noise and vibration is a lot for a baby to take. She is a little confused as to why she no longer has a cast and a bit clingy but fine apart from that.

So far it seems like the brace will be very easy to deal with. It goes on over her clothes so no worries about explosive nappies or the likes! Weaning a baby while she is in a half body cast is not something I would wish on anyone ;-)

Hopefully we are well on the road to happy healthy hips.