Friday, January 14, 2011

Rett syndrome: you're on your own until the cops come...

One of the most distressing news items I've read in a while.

The mother failed to resuscitate her drowned girl. Having spoken of euthanasia and murder-suicide, she now finds herself being investigated by the coroner to ascertain whether murder charges should be laid.

Rett girls have such severe swallowing problems that they often inhale liquids (and hence literally nearly drown with every meal). They lose purposeful hand function, communication, speech and often walking ability. And worst of all is the constant screaming as the anorexic Rett girl's brain continues to fail. Screaming doesn't mean only confusion or unhappiness. It surely means unbearable pain.

What kind of parent would *not* consider whether their child would be better off dead than live a life with Rett syndrome? At age 2, the worst is yet to come. Given the lack of help and resources in those early years (with the huge queues for help for all the autism spectrum disorders, Rett is just another waiting list entry), thoughts of euthanasia must come to everyone. The difference with this woman is that she spoke these thoughts aloud.

And so did I. To my partner, not to DOCS. Naturally enough, my partner reacted with horror and disgust. But he missed the point.

I didn't speak these thoughts aloud because I intended to act on them. In fact, I expressed them for the opposite reason: to make sure I *didn't*. Euthanasia was an impossible solution to an unbearable problem. Expressing it was simply expressing the impossibility of the predicament we and our girl were in.

It's a weird world if you're a carer. We've realised the hard way that what we do on a daily basis is virtually ignored by society (or even actively frowned on, such as when our child makes strange noises in public), yet if we make one slip, we'll know from cases like this one that we'll be studied forensically.

Meanwhile, looking back I can say that death couldn't possibly have been more painful for my girl than what she went through, and she went through it for many months. With death by drowning, it only happens once. With Rett girls' swallowing difficulties, drowning happens, or nearly happens, at every meal, to the point where they simply refuse to eat or drink at all.

What kind of world would ask a mother to resuscitate a child to that kind of existence? Especially when conventional medicine has nothing to give in terms of treatment?

I don't know what I'd have done if my girl had fallen into the pool and drowned. If it happened today, I'd dive right in and give her mouth-to-mouth, no matter what. She enjoys being alive; she loves us; she's not in pain. Looking after her, however difficult, can be a joy. But if it had happened when she was going through her eighteen month long period of pain, anorexia, screaming, night-fits, head-banging, hand-banging, not drinking at all?

No, I can't answer that.

All I know is something causes autism. And given that not all Rett girls show the gene associated with it, and that Rett syndrome (like all the autisms) appears to be increasing from one in 15,000 to being the leading cause of severe intellectual disability in girls, I think it's fair to ask whether something similar contributes to Rett syndrome?

Addition: I just wanted to add that one of the hardest things with our girl has been to keep her away from water. She loves water; she'll do anything to get to it, and doesn't recognise the danger if it's deep. All it takes is one carelessly closed door...

In fact, any danger-zone seems an instant drawcard to her! I once had to rush out in my night-dress because my son admitted that he'd let her outside twenty minutes earlier... There she was, being carried around from door to door by a distressed-looking ute driver. She'd been found running circles on the highway!

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