50/50

[needmorecoffee]

Jyst been told by my paediatrician (and had it confirmed by Scope) that children like dd with severe quadraplegic CP only have a 50% chance of living to 18.
Feeling a bit weird inside.
Doc also didn't have anything useful to say about how to give dd a better chance of being in the living 50%. He said seizures and pneumonia carry of kids like dd or sometimes they just don't wake up.
Now I know none of us are guaranteed anything about living but its hard to look at dd and think 50/50.

Needsmorecoffee - I dont know what to say! You are having such a difficult time! Wanted to bump this for wiser folk. Magso

Oh god, you poor thing That must be so, so hard.

Poor you.

sending ((hugs))
My son has triplegia. He attends a centre for Conductive Education, and within the past 18 months, 2 children have passed away. I know, deep down, that this is something we may have to face, but I try not to think about it. I don't think you can prepare for something like that - you just have to deal with it if it happens. I concentrate on living each day the best I can and providing my DS with as much life experience and happiness I can.
Try not to dwell on it. You need to be positive for your LO.

I do. But I've only just found out. The Paed hadn't bothered to mention it till now and he said it off-handed like he thought I already knew.
He also didn't seem that fussed. When I was preg with dd and wanted a vaginal birth after c-section the doctors went nuts citing 0.5% uterine rupture rate as sky high and unacceptable and practically likely to happen right now etc etc. 50% chance of not making it to 18 is even worse odds than most childhood cancers but there's no fuss, no special clubs, no 'going to Disney'. Not that I want those things but it feels like cos its cerebral palsy and not a 'tragic normal child' its not quite so important.
Maybe I'm reading him wrong but right now 50% feels like a huge number to me.

sorry to hear you've had such pessimistic news.

hmmm sorry about choice of wording, pessimistic sounds like I'm casting doubt on your consultant or something.

needmorecoffee, it is not something your paed hould have said flippantly to you

.

Ach.

I mean, I'm dimly aware of the seizure risk (DD1 has fairly ghastly Epilepsy) and I don't expect her to live to three score years and ten. But no-one's ever put a number on it, and I don't think any of her doctors would care to or would think it helpful. And her lead paed has recently lost his only child who I think had CP, so if anyone had a right to talk about it he has, iyswim.

I'm all for telling it like it is. But there's a difference between telling you stuff you need to know and rubbing your nose in it. .

Oh, I don't think he meant to be unkind but cos he knows I read everything he probably assumed I'd read the lates stuff on life expenctancy with CP. I have now read the report myself and its pretty grim. Basically, the more severe the physical impairment the less cance of making it to 18. If there's cognitive impairment too then it gos down further (not sure why). The study didn't look at why, just numbers and had 3 criteria. Mobility, hand function and mental ability. DD has no mobility (not even rolling), no hand function so falls into the severe category. So far she doesn't have a cognitive impairment but we're fending off Lennox-gastaut syndrome which will give her one.
Sometimes I feel like all the stops are pulled out for cancer/heart problems etc but CP is just managed. I'm aware there's no cure for brain damage but it feels like no-one really cares anyhow. All her treatments are about 'managing'. none about improvement iyswim while other conditions its all about 'cure'. There's probably a good reason in that cancer can often be cured and CP can't but sometimes CP feels like the forgotten condition.