Hip Dysplasia

[cannedemma]

Hi all,

Just wondering how everyone is going now with their babies in spica/braces/surgery...

Charlotte is doing well, still got over a month until our next check up to see how she is going, i think she is tracking well, she can sit up but cannot pull herself up from lying down yet, she can move around alot on her tummy, she is actually getting up onto all fours trying to crawl but is unsuccessful because she can't move her legs independantly of each other... so hopefully she will try something else... perhaps commando crawling... not sure, i would love to see her find her way around a bit!

Anyway, havent heard from anyone in a while and was just wondering how we are all going?

[MonicaP]

Hi Everyone,
Emma- It is good to hear that Charlotte is doing well in her brace!
Hayley had her spica changed on the 6th and we go back in on the 4th to get her measured up for her brace which she will go into in 4 weeks. I am so looking forward to that as at least we can take that off for 1/2 an hour a day and give her a bath and she can go back to swimming lessons which she loved.
She isn't moving at all because the cast is too heavy so we are hoping that once the brace goes on she will get a bit more mobile.
She doesn't have alot of tummy time anymore because we have had trouble with her feet swelling (with the new spica they left her feet out because of the swelling) and when she is on her tummy they start to go a purple colour, but she is very happy and we try to put her in as many different positions as possible but mostly we have to keep her feet slightly raised.
She has adapted very well and she is a very happy baby which is good.
I look forward to hearing more updates!
Monica

[cannedemma]

Hi Everyone,
Emma- It is good to hear that Charlotte is doing well in her brace!
Hayley had her spica changed on the 6th and we go back in on the 4th to get her measured up for her brace which she will go into in 4 weeks. I am so looking forward to that as at least we can take that off for 1/2 an hour a day and give her a bath and she can go back to swimming lessons which she loved.
She isn't moving at all because the cast is too heavy so we are hoping that once the brace goes on she will get a bit more mobile.
She doesn't have alot of tummy time anymore because we have had trouble with her feet swelling (with the new spica they left her feet out because of the swelling) and when she is on her tummy they start to go a purple colour, but she is very happy and we try to put her in as many different positions as possible but mostly we have to keep her feet slightly raised.
She has adapted very well and she is a very happy baby which is good.
I look forward to hearing more updates!
Monica

Monica that is such great news that you only have four weeks left before geting Hayley into a brace! At first for me it was a bit hard but Charlotte is fine with the brace and i think that hayley will be fine too! She will be alot happier to be able to move more and will start getting more strength... they say babies in spica and brace end up stronger in the back and neck because they cant use there legs as much!

we go back in march for our first xray since she went into the brace so i am looking forward to finding out how it is working, fingers crossed it will be helping alot and hopefully they can give me an idea of a timeframe then... i guess my worst fear is that they will say it hasnt worked at all and she needs surgery...

how old is hayley now? i wonder how old they will be when they are brace/spica free????? i really wanted charlotte to be out when she was 1 but i dontthink that will happen...

[MonicaP]

Hi Emma,
Hayley is 6 1/2 months now so she has been in her cast for 2 months. How old is Charlotte?
I'm pretty sure Hayley will be fine in her brace but we are wondering if once it comes off for 1/2 an hour each day she might get upset when we try to put it back on again.
Do you find this with Charlotte or is she ok with putting it back on?
When the surgoen changed Hayley's cast he said the hip felt stable in the socket which he was pleased with. We have been told she will be in the brace for 2 months if all goes well so hopefully she will be out of it completely by the time she is about 9 months.
I can understand why they say they have a strong neck and head. Hayley has amazing head control and lots of people comment on it. When on her back she lifts her head and as much of her back as she can off the ground as if trying to sit up and she can hold herself up like that for ages!
All my best wishes for you and I hope that Charlotte is out of her brace for her 1st birthday. Keep me posted with how you are both going!!
Monica

[caraash]

Hi everyone,
I'm new to this website and very happy and relieved to find a forum with other mums and bubs going through the same thing.

I have a 6 1/2month old who has HD and has been in a brace for 2 1/2 months. I was told at the onset that she had a severe form of HD and that she would be in the brace for 6 months. Of course I was upset to hear this but thought as long as she doesnt have anything life threatening we would get through it. We have not been able to take the brace of at all not even for a bath which has been challenging through summer. But my little angel has taken to the brace really well and has been her same smiling self which has made it much easier for all of us

Yesterday we had the routine monthly ultrasound and appointment with her Orthopaedic Surgeon (OS) and was told that her hips are not improving and will need to have a procedure done in hospital to see if the hip is sitting deep enough in the socket and will need to be in a plaster cast for 6 weeks. I just burst into tears in the OSs office.

I am so sad about this and wanted to know if anyone has gone through a similar thing? We are waiting to get another opinion and am anxious about her being under anasthetic.

I hope someone can shed some light and support.
Caraash

[Lizy79]

Hi everyone

I'm new too and registered as I Googled HD and came up with this forum - after reading all the posts I decided to join.

A bit about me and my DS...

DS (yes a boy and apparently VERY rare to have HD) was diagnosed with HD last Nov after I noticed he limped when he walked (DOB 29/05/07). It took one month to get into the local paedatrician and get a referral to the Children't hospital Princess Margaret (PMH)- we just rec'd a letter yesturday that we have our initial appt at PMH in one month. It says that DS will require x-rays and the appt will take up most of the afternoon (we live 5hrs away). I assume at this appointment that they will advise us of the next step, which from what I have read/heard from others is a cast, I just Googled images of these casts and got quite upset... I have been pretty ok up until this stage but scared myself with the pics of all these immobilised babies... I just dont know how we are going to cope - our DS is 21 months old at the moment...has anyone else gone through this with an older baby???

Both me and DP work full time too - so not sure how we are going to manage that one either??

Just hearing everyones stories I think will make me feel a little better - and not so alone

[MonicaP]

Hi Everyone,
I hope you are all doing well.
Emma- I am glad to hear that Charlotte is crawling. I hope all goes well on Friday. Let me know how it goes. Hayley is finally out of her cast and in her brace and has been now for nearly 2 weeks (very glad to see the back of that!). 3 days after the brace went on she started rolling over and now has that down to a fine art. It is so good to start seeing her be able to move a little. She has had a couple of x-rays both of which the surgeon has been pleased with. We go back on the 18th and hopefully then she will only have to wear the brace at night. Hayley has been ok with going back into her brace after her bath but she is only allowed to have it off for 1/2 an hour so it might be different when she stops wearing it during the day.
Welcome Caraash and Lizy79- My daughter Hayley was diagnosed with hip dysplasia of the right hip at 4 months and went into a spica cast for 3 months. She is now in brace and has to wear that for another 2 months. At first it was very hard and I cried alot.Hayley was very distressed when she came out of recovery and no matter what we did we couldn't get her to settle. Our surgeon told us that they adapt remarkably well and she did. By the next day she had stopped crying but she wasn't smiling alot however 48 hours later she was her normal happy self. It took myself and my husband alot longer to adapt but we did eventually. You can't bath them while thay are in a cast so Hayley had to have a sponge bath. It did affect her night sleeping. She went from going down easily and sleeping through to not wanting to go to bed and waking alot during the night. We were told to expect this and she is only now starting to sleep better at night.
I was also very anxious about Hayley going under anaesthetic and it is so hard and upsetting watching the surgeon carry your baby into theatre (because of her age we were not allowed to go in with her while they put her under). Hayley has been put under 3 times now (at 7 weeks she had a hernia repair and twice for the original cast and then a new one 6 weeks later). She has no reactions to the anaesthetic but does get upset when she comes out of it and cries in recovery. She takes a little while to settle again but overall she is fine.
Lizy79- I am sorry I can't give you any advice on an older child going into a cast. I also live in Perth and have been going to PMH for all Hayley's treatment. The cast technician who put on Hayley's original cast is so lovely and helpful. Her name is Scott and she came and saw me prior to the cast going on and answered all my questions. She also came and saw us after the surgery and to go over everything with us. Though I am not sure if you will see her at the intial consult. We have nothing but praise for the people we have so far dealt with at PMH. We are private so have mainly been dealing with one ortho surgeon but occasionally have had to see others and thay have all been very helpful. It will take up most of the afternoon. Our appointments are usually at 2.30pm and we don't leave until about 4.30-5.00pm. Try and get there a bit earlier as parking is terrible. Hayley had already started to roll when the cast went on so she was very upset at not being able to move. I hate to say it but your DS will probably be very upset about being immobilised but so many people told us how quickly they adapt and it was so true. Being older and stronger (Hayley was only 4 months when it first went on and is now 8 months) he may be able to eventually move himself around with the cast on.
I hope this helps and good luck with it all. I hope it all goes well at your next appointments. If you have any more questions please feel free to ask.
Monica

[AlishaCooper]

I don't know if this is still relevant to the way they do thing now days, but I was a child born with this hip condition and it is something that you have to keep an eye on later in life.

My hip problems resurfaced when I was a teenager as I was going through my growth spurts and I ended up having to have a couple of hip reconstructions to deeper my hip sockets. All is well now though and I am 28. I think my mum and dad must have gone through quite a lot with me as I was in the brace for two years! But it was all worth it as I can now walk perfectly.

I have also heard that I have an increased possibility of having children with this condition, but so far it hasn't been the case. I wish you all the best of luck with your children, it is a little uncomfortable at times, but in terms of problems with babies, it is definitely a manageable one.

[Miss.September]

Hi ladies!

Thanks for your stories. Alisha, can I ask how old you were when you were diagnosed?

Cheers,

Corelly

[cannedemma]

Hi Emma,
Hayley is 6 1/2 months now so she has been in her cast for 2 months. How old is Charlotte?
I'm pretty sure Hayley will be fine in her brace but we are wondering if once it comes off for 1/2 an hour each day she might get upset when we try to put it back on again.
Do you find this with Charlotte or is she ok with putting it back on?
When the surgoen changed Hayley's cast he said the hip felt stable in the socket which he was pleased with. We have been told she will be in the brace for 2 months if all goes well so hopefully she will be out of it completely by the time she is about 9 months.
I can understand why they say they have a strong neck and head. Hayley has amazing head control and lots of people comment on it. When on her back she lifts her head and as much of her back as she can off the ground as if trying to sit up and she can hold herself up like that for ages!
All my best wishes for you and I hope that Charlotte is out of her brace for her 1st birthday. Keep me posted with how you are both going!!
Monica

Hey Monica, so sorry for the delay in response! I have moved house and lost my internet!
Charlotte is fine with going back into the brace after bath time, was a bit tough at first but fine now! She started crawling in the brace this week which is really exciting!!
We have our 3 month check on Friday so fingers crossed it goes ok!

I hope all is well!