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Should we save severely physically developmentally disabled children?

Cheap. Easy. Cruel.

15:39 / 06.11.03

I cam across this article earlier in the day. I was discussing it with a friend and he seems to think that the child should have been allowed to die in peace. He argues that by interfering with the "natural process" we have doomed this child to a life of pain and endless surgery.

As the parents, would you have opted to save the baby, or just let it die? I would have done everything in my power to save her.

18:38 / 06.11.03

One of the benefits of self-awareness and problem-solving in concert is that we have the unique ability to prop ourselves up when we're missing pieces. There doesn't seem to be any reason we shouldn't when we can.

I mean, surely the machinations of reproduction were never meant to fail, and to trap a perfectly good, sentient awareness into a body that's crippled, or paralyzed, or still-born. So where and when we can help them along, why not?

There's always the question of whether the cure is worse than the disease, I guess. And there's always all those other questions that every issue seems to have.

:<

10:23 / 07.11.03

As the parents, would you have opted to save the baby, or just let it die?

I don't think I can answer this part of the question as I'm not a parent. I was talking to a friend of mine recently, and said that when his wife gave birth, he knew his life has changed forever. He also went on to say that he knows his love for his daughter outstrips anything she'll ever feel for him. It's just there, almost a biological imperative, which now colours and affects everything he does. With this in mind, I can understand why the parents would go all out to save this child, even if it might not be the most cool, calculating and rational thing to do.

10:31 / 07.11.03

Save the baby, every time.

23:09 / 07.11.03

Just to play devil's advocate on this one (and because I think people sometimes go too far to save the child to spare themselves the guilt of watching her die, and they turn themselves into martyrs in the process)... In the case of the baby missing half her ribcage, she's going to have to have "several surgeries" according to the article, but this really translates into the possibility of dozens of surgeries as she outgrows the titanium ribs. And every one of them will be horrendously painful, and have a pretty lengthy healing time. Not to mention that her undersized left lung will probably keep her from being able to do the things other children do (like run). And babies born significantly premature with breathing difficulties quite often end up with brain damage from oxygen deprivation.
At this point, you have to ask yourself, did the parents do what they thought was best for their baby in the long run, or did they make the decision to do what they thought they could live with? Hmm...

Less searchable M0rd4nt

13:34 / 09.11.03

I think there may be some substance to the accusation that parents who make this kind of choice are being 'selfish' by choosing to fight for their child's life when that life will be laced with great suffering. But we should also listen to the voices of children who are dealing with severe and disabling conditions.

For example, I recently stumbled on an Lj community for young people with cystic fibrosis, a condition that has only become treatable relatively recently. There was a time when a child born with this disease would have slipped away well before their tenth birthday, and many people have suggested that this would be kinder given the appalling effects of the disease, the painful physiotherapy and the severe side-effects of the medication needed to keep sufferers alive.

The thing that struck me most was the sheer passion that these children and young adults had for life. Despite the pain, despite the fear, despite all the terrible, terrible suffering, they were all fighting. Ask them if they should have been allowed to die rather than suffer and they'd probably kick you in the nuts.

Is it really the infant's well-being we're considering here, or is it our own discomfort at the thought of her suffering?

18:58 / 13.11.03

Is it really the infant's well-being we're considering here, or is it our own discomfort at the thought of her suffering?

I like that. You're right, regardless of circumstance, deep down each and every one of us is still happy for being given the chance to interact with big ol' crazy world in some capacity, for whatever it's worth. It's amazing the amount of suffering and opposition a human can withstand before they actually start to resent being given life.

It's how we'd feel about the child's suffering that we're reacting to when we consider euthenasia. But what about the child itself? The child's personal experience of the world? Maybe it's worse, far more traumatic, to be allowed to suffocate to death minutes after being brought into the world, plunged straight into existential extinction and whatever-comes-after before you've even been potty-trained. Maybe that sucks. Maybe it's one of the most violent and painful experiences you can inflict on someone. Sure, the baby can't express the fact that it wants to stay here, wants to survive -- but it doesn't need to. Of course it wants to survive, that's what we do, that's why we're still here -- because we and our ancestors were concerned first and foremost with staying alive. And if you do help the crippled/sick baby into life, it will very likely have the same passion for life you mentioned the CF kids had.

When I talked about the cure being worse than the disease and all that, well, I didn't think about the alternative, and I wasn't really putting myself in the theoretical infant's shoes, not really. I think no matter what the question, the answer is always life. It has to be because there's no alternative that matters.

Right?

19:33 / 26.11.03

Sorry, not diz, but his GF--

I understand that the process of actually having a child kicks in heavy "maternal instincts" which would quite possibly change my (or anyone's) view on the matter. An infant is not a person, to me there is a continum of personhood starting at conception and continuing through the point where language is developed. The cost of making this infant into a person--both monetary and energy/time/emotion is far far greater than the energy it would take to make a new infant.

I don't actually critisize the parents who chose to keep their child because choosing not to help yourself does not actually end up helping others but I think it's good to question spending tens of thousands of dollars (possibly hundreds of thousands of dollars) on preserving one life when thousands could be saved if the same money were used on vaccines.

But yeah...that's what I would do.

Cheap. Easy. Cruel.

19:50 / 26.11.03

But, Diz's gf, couldn't the same arguement be applied to the vaccines? Less money could be spent on making new humans. The ones who got the diseases were obviously flawed for not having an immunity.

Just taking the piss here. I see your point.

01:49 / 27.11.03

At some point, it seems to me that the argument boils down to which lives are worthwhile; what/who do we consider truly human and therefore sacred?

I don't have an answer/ one answer to that (and my apologies for using buzzwords usually associated with the abortion debate - I don't want to go there at all, but I'm not entirely sober and just can't find less loaded terminology right now.)

Diz's gf makes an interesting point about the continuum of personhood starting at conception and continuing through the point where language is developed. The development of (complex) language is often seen as a uniquely human trait, and philosophically is a reasonable dividing line in that (shared)language is the marker between a simple other/not-me and an Other who can tell me what it's like to not be me.

I'm not sure I applaud or disapprove of the surgery, but I suspect that either the parents haven't really thought about the consequences of their decision or that they've set themselves up to be "good martyrs" in their community. It is Florida, after all...

I'm Rick Jones, bitch

09:35 / 01.12.03

I can't really speak for kids who might have died had they not been operated on, but I was diagnosed with (a thankfuly mild) case of cerebal palsy when I was 2, and I had several painful corrective surgeries throughout my childhood, so I'd say this: save them. Let them live and let live, not live and let die. Yeah, being sliced open sucks, but it's the far better alternative. Sanctity of life applies to us all equally.

Tryphena Absent

11:46 / 01.12.03

The only thing that I'm sure of where human life is concerned is that no baby can be priced. I think it's fair to talk about quality of life, pain and suffering but the cost of keeping a person alive is never valid. Money is a human construction, this baby's life is also a human construction but she's a sentient being that we do not control. We shouldn't let our bartering system decide our reactions towards people and we must never actively kill because it costs more to keep someone alive. This case doesn't necessarily fall under those terms but even in this case I don't think money should play an active part.

I don't believe in the sanctity of life argument nor do I think that this child should necessarily have been saved but really I just don't know. In twenty years time she'll probably tell the world that she's very glad she was saved, that she had a chance to exist and she'll be used to the pain of major surgery after major surgery. She has the right to go through these things because doctors can let her live. I can't judge, I don't know pain very well but I hope that she does live and that she's happy about it.

17:18 / 01.12.03

This is a hell of a question. In this PARTICULAR case, the parents didn't know prior to the birth (although with the battery of scans an expectant Mother gets in the UK I find it hard to imagine the same circumstances would arise here)

If they had, they would have faced a dilema.

This instance is not a million miles from (although WAY more severe than) the child being diagnosed with a cleft palate whilst in-utero. They detect that in the womb, and operate post partum. Sure there are more operations to come, but if something is operable, operate.

The detection of severe abnormalities (physical or mental handicap) in-utero opens up a much more disturbing can of worms. I know what my wife and I decided, when she was pregnant (I usually say "when we were pregnant" partially to underline the Partners role in the process, partly because I live for danger) but thankfully our son was scanned OK, and is able bodied etc.

Had he not been... I don't know...

19:56 / 01.12.03

I can understand the sentiment of not wanting to interfere with the "natural process," but I think there's very little likelihood of a parent feeling that way about their own child.

I once worked as a nanny for an infant who'd been premature, and was quite developmentally slowed both mentally and physically. His chief problem was an unexplained unwillingness to eat. Anything. There was nothing wrong with his digestive system that they could detect, but he refused anything more than 1-4 oz of food a day (at I believe 8 mo) and was diagnosed as "failure to thrive." He couldn't sit up at all, not even really propped on a pillow, and on his stomach he could only barely lift his head, for a minute or two before he became exhausted.

The whole time I cared for him, and it was pretty heartwrenching, I thought, 'this child just wants to die.' The mother made me literally force-feed him, shoving pureed food into his mouth as he cried piteously in feeble protest. True, he was sweet, smiling and affectionate, but weak and physically resistant to nourishment. It seemed to me that he should be allowed to fail to thrive, if that's what his infant body or self desperately wanted, rather than suffer that way. But I doubt I'd accept that diagnosis either, were I the mother.

21:41 / 01.12.03

christ! what happened to him (how long ago etc.)

Cheap. Easy. Cruel.

22:46 / 01.12.03

Sure there are more operations to come, but if something is operable, operate.

There were probably quite a few doctors out there who would have deemed this inoperable and written the baby off. I think that the experimental surgeries in cases like this are what drives medical technology forward. In 1976, a baby who was three months premature was considered to be beyond saving by the medical profession at large. Babies born this early are routinely being saved nowdays. I think that this sort of innovation is crucial. If it weren't for doctors doing things that went against "common sense" or the order of the day, we would still be in the dark ages of medicine.

13:34 / 02.12.03

Is it really the infant's well-being we're considering here, or is it our own discomfort at the thought of her suffering?

just playing devil's advocate here, but can't this sentiment just as easily go both ways?

I know that it would quite literally kill me to let my child go - no drama intended, but my life would be over. but it would just as effectively destroy me to watch her hurt day after day knowing that she may well never get past hurting, too. so either way it could be seen as a purely selfish act - let them live through the pain, you're hanging onto a possibly futile hope of survival and allowing them to suffer in the process. letting them die could be seen as a way to avoid the painful difficulty of watching them suffer.

I really think that most parents in this situation would be doing what they felt was the right thing to do for their child's well being. naturally, opinions will differ from case to case, even if the medical outlook is the same.

13:37 / 02.12.03

(I don't know what happened to that child. I lost touch with the family after a while. I did get an email w/ photos on his birthday, and he looked well enough.)

14:01 / 02.12.03

I'm pretty sure in such a situation I'd like my kid to have a fighting chance of a somewhat normal life. Since most parents declare for parenthood at least 9 months in advance, they've built up a lot of hope by the time the kid is born. They'll opt for life if there's any chance at all that the kid will live. Even if not, it will be a very tough decision. If it's not your kid, or you haven't seen it up close, you'll see it more abstractly.

Society is historically lousy at deciding whether kids live or die. When it does make such decisions, they're usually driven by the ideology of an elite, and they're prejudiced toward death (children of the elite excepted). Society generally considers things in the abstract or the aggregate. A human life, which is neither, should not have its beginning (or end) determined by society. The power of the parents to make this decision (until individuals decide for themselves)marks a living society. Society is for people, not the other way around. Otherwise, what's to stop a society from consuming its members, literally in the case of China's organ-harvesting policy, out of need or love of profit?

07:11 / 03.12.03

This is a decision that, in truth, is down to the parents, extended family, and in a closely-knit situation, the community such a child will be brought into and will live amongst.

It is a matter of weighing up whether the strain of looking after the child will be too much, which differs based upon the help and resources available.

10:45 / 04.12.03

The power of the parents to make this decision (until individuals decide for themselves) marks a living society.

Could that really be used as an indication of a "living" (what do you mean by that?) society? Are the parents really the best people to decide what's "best" for the child?

What about in cases where the parents hold extreme religious views, for example, which would make them decide that "unnatural" medicines should not be used, instead preferring to pray for their child as a solution? Should the parents have the right to inflict their beliefs on the child, even if it means that the child will surely die when it could otherwise have easily been saved?

12:29 / 04.12.03

Mlle Angilique

What about in cases where the parents hold extreme religious views, for example, which would make them decide that "unnatural" medicines should not be used, instead preferring to pray for their child as a solution? Should the parents have the right to inflict their beliefs on the child, even if it means that the child will surely die when it could otherwise have easily been saved?

No, the parents should/do not have the right to do this, just as they do not have the right to whip their child.

Supporting argument available on request