Saturday, 4 May 2013

hips of the dislocated variety

Smiler had his annual check up in Southampton a few days ago ~ I  genuinely hadn't realised that I'd been worried about it, but the amount of relief I felt when we were told everything looked good ~ it's difficult to explain. If you've had anything similar going on with someone you love, you know exactly just how intense that relief can be.

It all started back in 2008, when we discovered out of the blue that Smiler's hips were dislocated, and must always have been, as neither hip socket had developed at all.  Every step he took bone scraped against bone ~  the top of his femur (thigh bone) against his pelvis.  Bristol orthopedic surgeons described having to break one femur, break his pelvis, put a wedge of the femur into the pelvis to change the angle at which his leg was meeting his pelvis.  They might do one leg then the other, or possibly both at once.  He'd be in a plaster cast from his armpits to his ankles.  For months.

* * * * *
We decided we needed a second opinion.

So we went to a specialist orthopedic hospital vaguely near Birmingham (geography really really not my subject!), and the surgeon there said pretty much the same as Bristol, but that there were also problems with Smiler's ankle bones, and once the hips were sorted they would fuse his ankle bones and he'd need up to two years of continuous serial casting.  Let me think ... um ... no.

We decided we needed another second opinion ~ does that make it a third opinion?

* * * * *
I was in touch with a couple of other parents whose children had needed hip surgery but also had various other disabilities, who were an amazing support.  Steps, a charity raising awareness and providing support relating to a range of limb conditions, helped a lot too, providing straightforward information as well as hosting forums through which you could 'meet' other parents.

One of the main concerns that Mr Manley and I had was that Smiler would find being immobilised just too difficult, and withdraw from everyone and self harm, as he often did when frustrated.  He would wrap his fingers in his hair and pull, bang his head on the floor, on doors, cupboards, hit himself in the face and head with anything he could get his hands on ~ toys, books, plates (and, on one memorable occasion, the cat).  How would we be able to keep him safe from himself?  Were we going to have to sleep in shifts so that one of us was always with him and awake?  What would months of continuous anxiety and stress and frustration do to his thinking, his learning, his personality?

Another worry was how far this would set his motor development back ~ if he was in plaster for months then surely his torso would weaken ~ it had taken Smiler more than three years to be able to sit up ~ if those muscles wasted who knew how long and how many hours of physio it would take for him to build this muscle back up so that he could sit independently, let alone get him back on his feet!

The surgeons we'd met seemed to be getting sucked into the x~rays, seeing how to make the bones work out, but without any consideration for the child containing those bones!  I took the advice of another lovely mum whose daughter had significant specials needs, and contacted Southampton Hospital, and arranged an appointment with a highly esteemed surgeon there.

Luckily for us, Smiler was an officially interesting case ~ he's thought to be one of the latest diagnosed cases in the UK, and because of this exceptionally late diagnosis Smiler had virgin bones ~ as yet un~broken, un~pinned, un~plated, un~messed about with . . . a great temptation to a surgeon renowned for ground breaking surgical procedures and thinking outside of the box.

* * * * *
Three weeks later, we were at the Thursday morning orthopaedic clinic, trying to brace ourselves for what might be coming.  Prof literally walked into the room, looked at Smiler (who had just spent two hours cooped up in the car, so you can imagine how wonderfully calm and relaxed and cooperative he was being) and said 'months in a spica?  He'll go nuts!  You can't do that to him!'

So we had our surgeon.  
What next?

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