Hi Rebecca
My daughter, Maddie, who is now 13 months old, was diagnosed with clicky hips at
2 days old and our local hospital tried to treat it initially with an brace.
This was, I discovered later, useless for her as it was a bit more serious and
she actually had completely dislocated hips on both sides (bilateral DDH). We
were then sent to Oswestry (orthopedic hospital) where we have been treated over
the last year and we have finally come out the other side. I'm afraid we have
done most of the braces and a hip spica cast for three months and an open
reduction on one hip and a closed on the other. Having said all that it has
just been a very gradual process and not nearly as traumatic as it all sounds.
Maddie has coped fabulously throughout and is still the same smiling baby she
has always been. I think if we had been treated by Oswestry straight away and
put into a pavlik harness things may have been different. I have heard of many
successful stories of babies being diagnosed very young and a pavlik harness
being enough to stabilise the hips so I wouldn't panic too much.
I do appreciate how you must be feeling. When Maddie was first diagnosed I felt
like part of her babyhood had been taken from me that I would never get back. I
wasn't aloud to bathe her at one point for about six months and it was
heartbreaking. HOWEVER whatever had been put her way she has dealt with and
they all say its far worse for the parents as the babies know no different. The
plaster cast was so much easier than I thought it would be and there is loads of
support out there for you if you want it. I have found the charity "steps"
website invaluable. There is a discussion forum on there where you can chat to
loads of other parents in the same boat and I got all my practical advice from
there.
Please feel free to ask any questions you like - I know how you must be feeling
and it is very daunting but I'm sure Aidan will amaze you if you do have to have
further treatment.
Good luck and take care
Caroline and Maddie
----- Original Message -----
From: lady0fpern
To: clickyhipsclub@yahoogroups.com
Sent: Friday, August 03, 2007 10:03 AM
Subject: [Clicky Hips Club] Hello


Just thought I would introduce myself. I'm Rebecca and the mother of
a 12 week old son, Aidan.

He was diagnosed with clicky hip when he was 2 days old and wore
double nappies for 2 weeks. We joked about 'Does my bum look big in
this?'. As my husband's mother passed away, I didn't realise that she
had Clicky Hip - so unfortunately Aidan inherited this from his
paternal grandmother.

We saw the consultant when he was 2 weeks old and he was put into a
harness which he has been wearing ever since. After 6 weeks of
continuous wear he is allowed out of it for an hour a day - which
means bath time. He smiles as it is removed, however I feel the worst
mother in the world when we have to put him back in it as he is not a
happy bunny.

At the last appointment, at the hospital, they have been talking
about an arthrogram etc. The decision will be made at the end of this
month - and I'm praying that the harness will do its job in the next
few weeks. So worried about how Aidan and myself will cope if he
needs surgery and if he has to go into a plaster cast.

Any advice etc will be much appreciated.





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