Hip Dysplaysia Support Group

[nicoli]

Hi Bertie

We were refered to a local orthopaedic surgeon initially because our paediatrician knew it would take a while to get in to see Dr Little at Westmead and he thought it was best to start some sort of treatment as quickly as possible. We saw the local guy (who didn't specialise in children) for the first 12 weeks while she was in her pavlik harness and he then refered us on to Dr Little to manage her hips as her problem was going to requre ongoing treatment. We then seemed to get an appointment quite quickly with Dr Little. He is always very busy at the hip clinic which is held on Tuesdays after 1pm.

My suggestion would be to see the other doctor first and see what he says. The sooner you know what treatment is reuiqred and get it started the better. I know there are other people who have seen another doctor at the private medical centre at Westmead but can't remeber his name?

Regarding the subsequent child question, I was told by Dr Little to have my baby (boy due in August) checked at 6 weeks to see if there are any problems. I believe that ddh occurs predominantly in girls, but since it is in the family, any other siblings need to be monitored. I had a normal pregnancy and delivery with my first, no history in the family or anything, but I guess these things just happen. I'm a little bit nervous about the baby also having it, but realise I can't do anything about it anyway so just need to relax.

I hope you get in to see a specialist soon

Nicole

[bertie]

Thanks Nicole - we'll give this guy a try and see how we go...

We had our first x-ray and ultra sound today. The radiologist did the ultrasound first, in case they could avoid the x-ray. Olivia screamed and screamed when they were doing the ultrasound - it was awful. I kept thinking, if she is this bad when they are just holding her legs still and not even hurting her, what's she going to be like when she gets put into a cast?!? When the ultrasound showed there was definitely something wrong, they did an x-ray too. I made my husband go with her, as I just couldn't face hearing that screaming again as she would be put in some sort of restraint for the x-ray - I know, I'm a total wus. In fact, she was totally ok with the x-ray.

Anyway, her left hip is fine, but she has a shallow socket at her right hip, and her right leg isn't in the socket at all, but pushed up right above it which is why her right leg is shorter. I think the radiologist was a little surprised it hadn't been picked up before, which just made me feel like a terrible mum, and I can't believe we haven't noticed anything before - it seems so obvious now. I just assumed everything was developing ok as she had been meeting all her milestones and was crawling around so well etc...

So I am thinking a cast is almost certain, if not surgery too - I'm absolutely dreading it and I'm worried I'm not going to be able to handle it at all - seeing her upset makes me REALLY upset, and this probably makes her even worse! It breaks my heart everytime I see her smile, thinking how upset she is going to be.

Question to those of you with older babies in casts - do any of your children go to day care? Olivia currently goes 2 days a week, and I was assuming that she wouldn't be able to go, but speaking to a friend of mine today, she said why on earth not, and surely the best thing would be for Olivia to enjoy her normal routine (she does love day care) so as not to disrupt her life too much? What do you think? I was all for taking 3 months off work and basically molly-coddling her the whole time she is in the cast, but maybe that's not the best thing for her after all?

Bertie x

[minimatron]

Hey Bertie, you are not a terrible mum for not picking it up. Its not something that you can see plainly and if she has reached all her normal milestones then why would you pick it up.
As for day care, I shouldnt see why not. Just ask your carer. Is Olivia in Family Day Care or a big centre? My Olivia was in the harness but we kept her routine as normal as possible. Good luck.

[cjoe]

Hi all,

I am sitting here today in total confusion. My dd2 19mth has been diagnosed with DDH, it has only just been picked up. We are off to Dr Little tomorrow for our first consult. I am feeling lost - i have read so much and there has been so many good things then i find info about cases that haven't worked after several surgeries. I really need some support. I'm not sure how to deal with all the info.
Can anyone help.

[minimatron]

Hi cjoe, welcome to BellyBelly. I am sorry to hear about your daughter and the late diagnosis of ddh. I hope that you are able to get some answers tomorrow from Dr. Little. Apparently he is very good ( from what I have heard on here). I am unable to give you any advise on what happens with surgery as my dd was in a harness from 5 weeks old to 8 months. I do know that all these emotions are completely normal, there are loads of questions you will be asking, why my dd, why us, why wasnt it picked up earlier, what happens next. I think you'll find the girls in here will offer you lots of support, which you will need...especially initially and as specialist reviews come up.

Good luck tomorrow and let us know how you went,

Melissa

[nicoli]

Hi cjoe

We all know how you are feeling at the moment. It's hard to take everything in. Make sure you have a list of things you want to ask Dr Little and when you leave write everything down or you will probably forget.

We see Dr Little for our daughter Scarlett who was diagnosed at 3.5 months. She has been in a harness and brace since then. For over a year she has only worn the brace at night, but we have just taken it off for good. We have a review in July (just before she is 2) and will now need annual reviews until she is 4 to see if she needs an operation as her hip has been very slow to recover.

Like Melissa - I can't give you any advice on surgery I'm afraid. I do know that all the other mums that have been through it have been amazed at how well their little ones adjust. 19 months is a tricky age as they are starting to understand what is going on more, but maybe that will help in explaining what is happening through the process.

Good luck at your appointment - let us know how you go.

Nicole

[cjoe]

Hi Melissa and Nicole,

Thank you so much for getting back to me, it is wonderful to hear from others going through this.
Our trip to Westmead has ended up with Ella being booked in for surgery on June 23rd. She will be having a Pemberton Osteotomy, they have to open up the hip, reform the socet, put in a bone graft to hold it in the right shape and cast her chest to toe for about 6 weeks. We are hopeful that this will be all she will need in the form of casts, she may need bracing at night after that. So all in all I feel much better, we were told that at this age this is the best option. Dr Little was wonderful to talk to, he gave us a lot of confidence inthe team.

I hope both of your dd's are recovering well. Again thanks for your support, it really is appreciated.

Caroline,

DD1 almost 3, DD2 19 months

[bertie]

Hi Caroline,

Sorry to hear about your daughter - we are going through the exact same thing. My daughter has just been diagnosed at 11 months, and she will be put into a cast (12 weeks!) on 22nd - just the day before you! We are at Sydney Children's Hosp in Randwick though.

Our specialist thought surgery would not be necessary for her, and will just be pushing the bones back into their right place. I know it is hard to compare diagnoses, as I'm sure there are loads of different ways their hips can go wrong, but can you tell me why your daughter needed surgery? Is it that she was a little older? Is she walking yet? Like you, I have read lots of stories where treatment didn't work and they end up having to have multiple surgeries / casts, and I really want to avoid that if possible. I'm sure my specialist is just fine, but I hope he's doing enough iykwim...

At least you only have 6 weeks of cast - that must be a good thing!

I just posted in the other Hip Dysplasia forum, with loads of questions - I imagine you have the same questions, or if you've already been talking to people you may have some of the answers I need?!?

Anyway, like you I am trying to put on a brave face - it is not forever, and our beautiful daughters will be just fine at the end of this. We just have to get through the next few months, which I know are going to be traumatic. I wish we could get on with it though and didn't have to wait until 22nd/23rd!

Good luck,
Bertie