So I'm not sure that watching programmes about Great Ormond Street Hospital's PICU department and ethics committee is the best plan at the moment. Especially when one of the doctors highlighted appears to believe that children who are disabled, doubly incontinent, with learning disabilities, are not fully human and should therefore be excluded from his view that life is sacred. I think I know a few children who might disagree with that.
It's also not a great idea to watch a programme based in a hospital when you have a ventilator, a feed pump, and a SATs monitor running. Their alarms will be indistinguishable, and you will spend the evening either jumping up unnecessarily or criticising the nurse talking to camera instead of dealing with the alarm, only to realise the alarms are somewhat more local.
And then, Googling about for information on some of Mog's newer habits, I came across this article, "Indicators of Life Expectancy for Children with Functional and Cognitive Impairments." Which contains the following handy information "An 11-year follow-up study of 128,248 individuals ... indicated that the following factors are associated with a very short life expectancy: immobility; an inability to roll over; limited arm-hand use; and an inability to self-feed... Children who lived to age 1 year or older had higher survival rates, but survival was less than 11 years."
And we're in the middle of some difficult times for Mog. She's very happy, not currently ill, but not breathing any better at night (although thankfully the new intelligent SATs monitor gives us a slightly more peaceful night - I'm only up 3-4 times a night not 8-12), and just showing a few signs that she's not quite where she was a few months ago.
I'd be lying if I said I wasn't worried.
UPDATE: I like this article Swift posted as a comment far better!
Not sure when that paper was written, but children like Mog and Matthew would not have survived their birth half a generation ago and advances in procedures like gastrostomies and epilepsy drugs have meant that our kids are writing their own rule books with regard to longevity - here's to their teenage tantrums!!
I also tend to believe in what one of the docs told us 'Matthew will let you know when he has had enough' and I think, like Mog, he most certainly has NOT had enough just yet!!
But do totally understand your worry too......
There's several things that article could be criticised on, not least the population used. This is based on a better sample: http://www2.warwick.ac.uk/fac/sci/statistics/staff/academic/hutton/scope4.pdf
Agree with Val on both counts though...
Hello! Dear doctor! Alicia is 22 has not been able to even roll herself over nor does she use her arms or hands much. Rarely will exploe with her hands. She has been J tube fed for over 4 years, incontinent of bowel and bladder and has intractable seizures we were warned we would have only a 10% chance of ever controling. She is 22 thats 11 years past 11 and clearly at this time I am willing to bet will be here a t least another year! Her birth mum was told by the expert in Lissencephaly who is renound world wide for his studies of these children is the one who gave that sentence to her 22 years ago.
I beleive that the advances in tech and home care has greatly improved the longevity of our dear children.
Plus, if these so called experts got to really know these children they would see there is really quality of life. Alicia is in control of her enviroment and what she allows and doesn't allow.
Love to you.
I agree- Mog will let you know when she's had enough.
Does she have multiple diagnoses, or "just" CP- although I know there's no such thing
Yes, definitely love to you all.
I thought that I read you would be getting a night time carer? Has that happened/not worked out? Fingers crossed that you will get someone wonderful and let you have some well earned rest.
I read your blog when I need comfort. I can't give you any comfort but you are in my thoughts.
Good link by Swift. Agree that Mog will decide when she's had enough and she seems very strong in spirit from your posts about her here. Look how much she endures and yet she still has enough strength and spirit to come through it all and to be stubborn if she wants to be as well.
Go Mog - I love reading about you and your equally stubborn sister. :-)
My granny is a named author on two of the papers cited in that second study. How exciting!
As others have said, all of this data is essentially already out of date and gets more so every day.
Things that are likely to shorten the life expectancy of severely disabled people, based on my experiences and those of people I know very well with multiple, severe impairments, we're all now in our mid 20s:
*somebody thinks it would be better if you died, particularly if this is a person whose job it is to help you to be as healthy as possible
*not all possible measures are taken to keep you free of chest infections or seizures, or you do not receive the best possible treatment when you do have them.
*you are not well looked after in general - especially if you live in an institution.
*you are emotionally neglected, or constantly lonely or bored, and are not given opportunities to connect with people and express how you feel.
*you are not well nourished
My very dear friend Phoebe lives at Roy Kinnear House in South London. It's an 8 bedroom house, and everybody who lives there has multiple profound impairments including CP, almost everybody has a PEG, nobody can speak or walk or do anything with their hands and everybody is labelled as having a severe or profound intellectual impairment. Everybody has epilepsy. The housemates at Roy Kinnear are aged between 20 and 40ish. They have one to one support all day and 24 hour access to a nurse. As is normal for people with that profile of impairment, chest infections are not unusual. They are treated promptly and aggressively. At least one housemate uses Bi-PAP at night. Everybody enjoys generally good health and lots of chances to show how they feel about things. They're as busy as suits each person.
Without exception, the parents of all of the housemates were told that their young people would not see their first, fifth, tenth etc. birthday. It's a very well known phenomenon that profoundly disabled people whose emotional needs are neglected *will* essentially get fed up, give up and die young. The studies will include in their population base babies and children who are not cuddled if they cry, who don't get given pain relief even when they're obviously hurting, whose caregivers really don't care very much at all.
If there was a way to identify those little souls in these studies, the numbers would be drastically different.
Heck if that article was true there wouldn't even have existed "middle", "upper" or "FE" units in the school we both worked at!
I like Val's comment vis she'll "let you know when she's had enough".
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