Saturday, March 28, 2009

"It's almost like losing a child"

There are no words. From this UK Times piece, via troubleinchina:

Nine-year-old Daisy entered hospital in 2005 with a tooth infection, which turned septic. The hospital failed to supply the most basic medical care, giving Daisy neither food nor liquid in sufficient quantities. When she began gasping for breath the hospital told the parents that she would be transferred to intensive care, but this never happened.

It turned out that this was not an accident, but deliberate, and an official report on the case is being prepared by the ombudsman. As Daisy’s mother, Amanda Healy, told me: “The staff later admitted to us that they had ‘misjudged her quality of life’.” In other words, they had acted under the belief that Daisy - who loved and was loved by her parents and who, in Amanda’s words, “adored just waking up in the morning” - had a life not worth living and therefore not worth fighting to preserve.

One member of the hospital’s staff had said to Amanda, when she complained about Daisy’s lack of treatment: “People like you should realise that children like these are going to die sooner or later.” The remark that most shocked Amanda came from a doctor who was actually trying to be sympathetic, after Daisy had eventually died of a pulmonary haemorrhage: “It must be awful; it’s almost like losing a child.” It was the charity Mencap that put me in touch with Amanda Healy: hers is one of a number of similar cases involving what it calls “death by indifference” that it is pursuing on behalf of the bereaved parents.


The original piece goes on to note:

Yet even those who think of themselves as sympathetic can be astonishingly insensitive - in the nicest possible way. I couldn’t help noticing how many people expressed the view that the death of a totally dependent child with multiple disabilities, including an undeniably distressing form of epilepsy, must also have come as a relief to Mr and Mrs Cameron.

I too am the father of a child with a congenital disability - my younger daughter, Domenica, has trisomy 21, also known as Down’s syndrome. When she was born, an acquaintance who had a child with cerebral palsy told me: “Your problem won’t be that you will not love your new daughter, but that you will love her too much.” He was right, of course: it was a salutary warning not to neglect the needs of siblings.

Love should never be confused with pity, a sentiment we feel only for those whom we really don’t know at all. It infuriates me that children such as Domenica are invariably described as “suffering from Down’s syndrome”. In what way are they suffering? They have no disease. They have no ailment to “cure”, except - via the process of antenatal screening - their very existence.

What underlies this misplaced pity is a kind of selfish empathy. Someone sees a child lolling in a wheelchair and thinks he himself would rather not have been born than exist in such a condition - and so he decides that it would have been much more humane never to have allowed that child to have been born. He does not, however, consult the child.

j

16 comments:

Comrade PhysioProf said...

That is fucking horrible. The medical professionals who participated in denying appropriate care to the sick girl should be permanently stripped of their licenses to practice medicine/nursing/etc: whatever professional role they were supposed to be fulfilling.

DaisyDeadhead said...

This just made me cry today... it is my baby's birthday.

I cannot imagine the anguish.

:(

troubleinchina said...

*hugs Daisy*

I can't imagine it, either, and the horrible thing is that it's all too common.

The flip side is, of course, when a parent murders their child. The newspapers then tend to talk about how tragic that child's life was and how we should accept that the parent was just overwhelmed and who are we to judge?

troubleinchina said...

[by which I mean I find the general callousness to be horrific and enraging. I just think that these things happen for inter-related reasons.]

DaisyDeadhead said...

Hey, there is this, in the link:

In 1988 Nolan won the Whitbread prize for his second book, Under the Eye of the Clock.

This is a tremendous book! I had not known Christopher Nolan had passed on, which made me cry, too. But I highly recommend the book to everyone here!

((hugs trouble back!))

belledame222 said...

I can't imagine it either.

EthylBenzene said...

~sniff~

I also hear some of this same sentiment (i.e., your life is not worth living because some random person said so and decided for you) in some anti-vaccination rhetoric. I don't want to start a tangent and I don't care if you don't want to get your child vaccinated for whatever reason, but some of the rhetoric verges wildly into what seems to me to be almost, I dunno, anti-autism, and I can't imagine how it must feel for people who are on the autism spectrum to hear some of this stuff. I don't know if I'm explaining what I mean adequately and I don't want to set off a thread about vaccination, but I think some of that sentiment can be avoided when discussing the utility of a vaccine. Does that make sense? I apologize in advance if I've offended anybody.

Sara said...

Yes it feels about the same for people with Asperger Syndrome, being told either that "your life must be so horrible" on one hand, and when we defend it, we're told that we don't 'really' have AS, because people who do are noticeably 'weird' or something. This was the attitude of one of my psychiatrist towards it. The prospect of my being diagnosed with AS was dismissed offhand because I didn't have hand-flapping and whole body movement tics.

I also go with other commenters that those doctors who decided this on their own should lose their license. This should not occur.

belledame222 said...

at -minimum- lose their license. ideally i would say jail time, because that's fucking criminal, but what are the odds. for damn sure they shouldn't be working in the field, that's taking the Hippocratic Oath and -spraining- it.

EthylBenzene said...

I hope there is some kind of legal action that can be successfully taken against the doctors and hospital. It seems so clear-cut, but IANAL etc. But yeah they should never be allowed to "practice medicine" (if you can call what they did "practicing medicine") again.

andi said...

Everytime I read/hear these stories, I die a little inside.
It seems that people with "disabilities" are still valued less than "normals" -even legally. If you pay attention to the dates, Daisy was denied care in 2005. I doubt folks will be charged, stripped of licensing, ect 4 years later. Even if they are - it's 4 years too late. They should have been terminated immediately , but that's too much to ask of the people who are trusted with the care of sick people, apparently.
Apparently - so is basic compassion.

Ruth Moss said...

Oh god, words fail me, this makes me well up, how could anyone say that and deny a child basic medical care? How are the parents meant to carry on now without their little girl?

belledame222 said...

I don't know, I really don't.

welcome, Ruth, p.s.

Interrobang said...

On top of Jenny McCarthy's referring to "disabled kids in classrooms" as "shadows" in a Time interview (quoted at Respectful Insolence) and that weird ending to the piece ("Nobody consults the child"? That's the same fatuous argument as I hear from anti-abortion mooks who want to know how I'd feel if someone had aborted me -- I wouldn't feel anything because there wouldn't be a "me" to feel, duh), I'm slightly overwhelmed. Time to make sure my legal documentation is in order, I guess...

belledame222 said...

O-o-kay; no; in fact children with developmental disabilities aren't -in utero- and they certainly do have -selves.- And yeah, I think the piece about gosh, maybe the kid actually liked living and didn't want or -need- to die not so much from a tooth infection but actually from malign neglect-- I mean--seriously? Seriously? And what do you mean wrt legal documentation? Maybe I'm just misunderstanding, here. I hope so...

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