Sunday, August 22, 2004

...the little bleeder! 

Bless her. I've been meaning to write about Tara's condition. So here it is: Von Willebrand's Disease. We were looking at her today and counted TWENTY - FIVE bruises on her left leg alone. Tara is blonde, and very pale - skinned. I've never let her tan. She can choose to damage her skin later in life if she wishes. She bruises like an elderly person, the poor thing. Deep, lumpy, painful looking marks, that take months to fade, from where she's brushed against the furniture. They don't bother her, though. However they bother me come summer, and we're getting "looks" from people at the beach.

I attended several child - abuse awareness courses in my previous job, and before she was diagnosed, well. Those were DARK days. I'd look at my baby, with bruises on her inner thighs, arms, buttocks, and my child - minder would be looking suspiciously at me.

Since seeing the specialist, we've been warned that most parents of V.W.D children face investigation by the authorities. Allegations are usually made by assistant teachers / parent helpers / neighbours who don't know the child's medical history. It doesn't help that, and this is apparently a characteristic of the condition, she is an extremely active child. She was walking at seven months, and used to remind me of the Dancing Baby in "Ally McBeal". "No Martial Arts for her!", we have been told. Fair enough, but it's impossible to keep a small child wrapped in cotton wool.

Luckily, I've got the pager number of the best doctor in the country. Even if it's New Year's Eve, he's told me not to bother with the local hospital, and bring her to London directly.

I once kidnapped her from the local hospital, where they wanted to give her stitches in her tongue. They'd done this before, and it had only increased the bleeding. "Cut? Let's stick a needle in it. That'll sort it out!" She ended up with a haematoma that nearly choked her, and a thrush infection. Plus, she was constantly vomiting swallowed blood. Anyway. I took her home and prescribed a little of the tranexamic acid that had been given to me.(I have a mild form of V.W.D). The bleeding stopped, and she was fine. The specialist told me I'd done the right thing.

The scariest thing ever, was when she cut her lip and it was just DRIPPING blood. She was about ten months old, and I had to help hold her, and watch her go under a general anaesthetic. The way she went out, and the look she gave me...My Mother was crying openly, but I had to tell myself, "There are babies having open - heart surgery in this building. Little kids on dialysis, having chemo. Who am I to cry?"

I'm pretty much a hardened veteran now. So is she. The sad thing is, she's getting self - conscious about her bruises. "I wish I didn't have these", she's been saying lately. Oh, if I could only bear them for her...

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