Acetabular Dysplasia - anyone else has/had a child with it?

[Amiable]

DD has just been diagnosed as having Acetabular Dysplasia - basically her left hip joint has not developed properly and her hip has dislocated as a result.

She is being referred to Great Ormond Street Hospital, as she will need surgery to reconstruct the joint (probably more than one operation) followed by several weeks or even months in plaser from her ribs to her knees.

It's a horrible shock, and until we have seen the Orthopaedic specialist we won't know more - it should be within a week or so.

I would love to hear from other parents who have been through, or are going through, the same thing.

Thanks.

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Thats awful. Poor love. How old is she?

Sorry, nothing constructive to add, I'm sure someone else will be able to help though.

thanks for your message. She is 9 months old. i think the thing that worries me most is her having to have a general anaesthetic (sp?).

It just keeps going through my head. She was born with positional talipes, which is basically that her foot got squashed to one side in the womb, so we have been doing physiotherapy on her foot since birth, and I guess if I hadn't been so obsessed with her feet and legs we may not have realised that there was a problem higher up.

Her left leg is slightly shorter than the right one, and she has two creases where her left thigh meets her groin (which I just put down to gorgeous baby chubbiness!)

At least we should be able to get it sorted before she starts walking, although it hasn't stopped her "commando crawling" at top speed everywhere! The one good thing is that she is not in pain, or suffering at all. it just needs to be sorted to prevent future problems.

This is my first message on mumsnet, but hope that I can help. Not sure on the exact terminology, but both my sister and I were born with this condition (now aged 43 and 34 respectively).

My sister went undiagnosed until 18 months old, by which time she had just started to walk (had crawled by 10 months). She had to have a pin put in to keep her leg in place, and was in and out of plaster for around 18 months. However, it was a relatively new procedure at the time, so I'm sure that the timescales will have reduced by now.

My condition was spotted at 6 months. I also had a oddly positioned foot due to being squashed in the womb (9lb 15oz!) although talipes was not officially diagnosed, and even though my mum knew what to look for, she still didn't realise for those first few months, so please don't feel guilty! I just had a GA whilst they manipulated my leg back into the socket. I was in a plaster from ribs to ankles for about a month, then a "frog" plaster for the next 5 months. I was walking by around 15 months.

Both my sister and I had full mobility throughout our childhood and early adulthood. The bad news is that my sister developed arthritis and did need a hip replacement at 37, which we think was a result of the extra weight that she put on in her pregnancies. The consultant had warned about this at the time, but again, we don't know if this is because the procedure was "experimental" at the time.

I had my DD 9 months ago, so am keeping a close eye on my own hip (put 4 stone on during the pregnancy...) but so far all ok.

The good news is that neither my sister's 2 sons, nor my daughter have inherited the condition.

I know that it must be a really worrying time, and I'm sorry that I've had to tell you about my sister's hip replacement, but she is absolutely fine now (nearly 6 years on), and as she had it quite young, her recovery time was quick.

Let me know if there's anything else I can tell you.

Tattycatty thank you so much for your message and the helpful info you have given me.

The doctor did warn me that chances are DD will get arthritis and need a hip replacement later on in life, probably in her 30's or 40's so don't worry, your message didn't scare me!

did you find that it affected your childhood at all - y'know, running about with your friends, that sort of thing? What about follow up checks once she is back to "normal"? Is it something we (and she) will have to monitor for life? It sounds like it from your post.

I guess I'm just looking for as much info about what to expect long term as possible - I'm getting my head around the short term stuff.

you say you had your DD nine months ago - when is her birthday? My DD was born on the 24th Feb. Thanks again for posting, i really appreciate it.

Steps will be able to help

Amiable- if it has been diagnosed at 9 months there is a good chance the Consultant at GOS will be able to get the hip developing normally. Arthritis is by no means inevitable!

tissy, thanks so much for the Steps link - I have already registered and will become an avid poster/reader I'm sure!

Both my sister and I had a completely normal childhood - both did ballet, tap, gymnastics, ice skating. I was fairly rubbish at all of these, but that was more to do with a lack of coordination than my hip! My sister on the other hand won medals for dancing so no problems there.

From memory, we went for check ups (an xray and very quick consultant appointment) once a year until we were about 9 or 10, then signed off. I can't really remember my last check up, so I must have been fairly young.

I saw a specialist again when I was 11 as my hip started to niggle a bit, but it was put down to growing pains. So in answer to your question, we weren't actually monitored that closely.

Tissy is right that the early diagnosis may mean a far better outcome. Mum wasn't given any warnings about me as I had been diagnosed so early, and I think that my sister's treatment was made a lot more difficult because she had been active for so long.

My DD was born on the 26th February, so just a couple of days later than your little one. She's showing no interest at all in moving herself - more than happy for all her toys to be passed to her!

Really pleased that I've been able to help. Keep us posted on how you get on at Great Ormond Street.

Amiable Firstly wishing your DD all the best - Hope you don't mind me asking - My DD is 12 weeks and I noticed at weekend that she has now got an extra crease at the top of her leg where the thigh meets the groin like you mentioned with your LO - had clinic today and asked the HV if this is ok, and she said "it's fine, she is just a chubby baby (already 15lb) and we check the creases at the back of the legs at 8 months, why are you worrying, her creases were checked at 6 weeks and were fine"
I felt a bit silly, is that where your DD had her extra crease?

Jam77, i would definitely say go to your GP and push for an appt with a specialist. If it is caught young enough the recommended treatment is usually special braces, without surgery, and have an 85% success rate according to several websites I've looked at. To be honest the creases could just be normal chubby thighs, but I really think you should get it checked out properly just in case.

DD's creases are on the inner front of her thigh. I am sure your HV is trying to be helpful and stop you worrying but she isn't an expert, and you should get an expert opinion on this.

Thanks Amiable I have a paediatric appointment in Jan - I'll bring it up then, they should be able to check it out shouldn't they???

Aimiable I've posted on our Feb Thread as dd1 had this! I've popped you a couple of links to good support sites on there too if anyone else wants them give me a shout!