'Pillow angel' surgically altered to remain small

[Sandman]

Just what we need, another bioethics thread.


Frozen in time: the disabled nine-year-old girl who will remain a child all her life.

Ashley's parents call her their Pillow Angel, a moniker that is a reference to the love and joy they feel for their nine-year-old daughter and the severe disabilities she has suffered from birth. She cannot sit up, walk or talk, is fed by tube, and, as her parents put it, "stays right where we place her - usually on a pillow".

Ashley won't know this, as she is brain-damaged and has the awareness, her doctors say, of a baby, but she has become the subject of a passionate argument in disability circles and beyond. Her name is becoming synonymous with the debate about the acceptable limits of medical intervention in the care of disabled people.

The parent's website (may not be working)

[Guynemer]

Yikes.

That's really all I can say. Yikes.

[Solver]

There's no saying what neurosurgery might be able to achieve 30 years from now. Maybe it will then be possible to repair the brain damage, but this "treatment" will sure much reduce the possibility of her leading a somewhat normal life if that ever happens. And the premise itself is quite possible - after all, modern medicine can, in many cases, restore vision to blind people, which was quite unthinkable not so long ago.

[Guynemer]

Brain surgery can't repair brain that isn't there, Solver. My best guess, based on my experience as a pediatrician, is that this poor girl probably has very, very little cortical tissue; she more than likely just has cerebrospinal fluid where her brain should be.

[Solver]

But can you be sure it won't be possible 30 or 40 years from now? 40 years ago the first heart transplant was made, lung transplants are under 20 years old. Who's to say there wouldn't be something like a brain transplant, or an artificial brain (okay, the former is more likely)?

[BlackCat]

What worries me the most is this passage :

State help for caring for disabled people is available through Medicaid, which is restricted to poor families. Ashley's parents would not qualify, and say it is impossible to find carers they can afford.

I think it's really strange that a society finds it reasonable to force the members to commit suicide if they get sick.

[Guynemer]

Not without stem cell research, and even then that's more like 400 years away than 40.

[Solver]

Not without stem cell research, and even then that's more like 400 years away than 40.

I really hope that you're seriously off with that estimate. And I think that the policy of some countries, in particular the USA, against stem cell research is really bad...

[Dr Strangelove]

The complex patterns of interconnections that make the brain what it is are laid down when the brain is very small, less than a centimeter in length. Post-natal learning is actually accompanied by a reduction in the number of connections, i.e., synapses. The cell processes which during fetal development snake out from the neuronal cell bodies to make these connections have to literally "sniff" their way within the vast array of cells developing within the brain in order to find the right target to connect to. They're designed to do this when the brain is very small. Asking them to do that when the brain is a hundred times larger I believe is asking the impossible.

[trev]

It seems very unnatural and wrong to stop the growth process in any person, even severely disabled as in this instance. However the treatment will aid her parents to keep her care more personal and intimate which is definitely desirable. With two conflicting emotions, I am not going to judge the actions of the parents and doctors, but in a similar case I doubt I would do the same.

[Bugs ****ing Bunny]

Bonsai children! Brilliant!

[Ari Rahikkala]

They should have made a delicious stew out of her when her meat was still tender .

[Cort Haus]

I've never been in favour of people leading vegetative existances, and would rather be switched off myself than artificially sustained.

The parents should put their energy into cutting their losses and trying again.

[alva]

Same here Cort, same here.

[Bosh]

Damn, what twisted parents.