Registered User
new to this
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.
Registered User
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
Registered User
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
Registered User
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
Registered User
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
Registered User
Hi Bertie,
We were told that as Ella is over 12 months, surgery was the only option. I was concerned that I initially started this process at 14months when she was walking independ. Dr Little explained that had we seen him then he would have waited until around 18months for this treatment. All I can presume is that it is an age thing. I'm sure your specialist knows what he is doing, you can always ask for a 2nd opion, we only had to wait 2 weeks to get into Dr Little. I'm sure though we are having surgery as the first option as Dr Little said that there is no point in Ellas case to do anything else as it wouldn't work, I hope he is right as the thought of surgery scares the hell out of me!! I just keep thinking that they know what they are doing and they are an experienced team.
I hope all goes well for you and don't beat yourself up not noticing, our local GP and Paed missed it too, it was just an X-ray to reassure me that picked it up.
They will be ok in the long run, really this is just another phase of their growing up, it may be a hard one, but so were all those sleepless nights and learning to self settle!! We mums are strong and will get there in the end.
Take care and keep smiling, sining also helps!!! - you can't be in a bad mood when you sing, I think I have run out of tears over this and now we just have to get on with it and be practical about it all.
Take care, let us know how you get on.
Caroline
Registered User
:pray:
Hi Bertie,
Only a couple of days to go now, i hope all is well with you and that the next few months are not too hard on you, everyone keeps telling me that the children cope better than we do. We should be back from Westmead next weekend 27th June. I have my DD1 3rd birthday party the following week so at least I will be kept busy. We had to postpone it for DD2 surgery.
Take care
Caroline
Registered User
Hi Caroline,
I have been thinking of you too - not long to go now! I think the worst is the anticipation - at least once our poor babies are in their casts, we can begin to get on with life and count down the days until the casts come off...
We are actually celebrating Olivia's birthday today - her birthday is not until the 30th, but I wanted her to have a lovely celebration without the cast. Just a very small family gathering, but she will have fun opening her presents and getting her first taste at cake! I did have some trouble choosing presents though - tried to get her some stuff that would entertain her over the next few months...
Best of luck to you and your DD on 23rd - will you go in with her to the anaesthetic room? I'm struggling with this at the moment - have heard it's very upsetting, and maybe should send daddy in with her, but I want to be with her when she needs me!
Bertie x
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