To treat or not to treat?

[Domestika]

YES the child is going to die... soon. but we ALL die eventually. why is 90 years more important than 2.5 years and of more value? I know it's not really the same thing but how can you say to a parent "Sorry... someone else needs the respirator to keep them alive so we have to take it from your child and let her die sooner than she might have otherwise"

I think the better point, for me anyway, is quality of life. I've seen documentaries on various fatal childhood genetic diseases. The parents know beforehand and decide to have the child anyway. The child lives a life for X amount of time, interacting with parents, growing, learning... That's one thing.

In this case, on the other hand, the most they can usually do is breath and maintain a heartbeat. Some have an automatic response to feeling or pain, most are blind and deaf. We're basically talking about what could have been a child, but instead is a perfect little body...with virtually nothing inside.

I think in our society more than a brain stem is required for a person to be considered a "person". I think this debate ties in really closely with abortion...we're basically questioning the meaning of the word "life" or the definition of "personhood".

I would think, as a parent, that sometime in the space of two and a half years you would realise that you're keeping a body alive and that other peoples' children are dying because they don't have access to the ventilator you are using. That's just a fact. Other children are dying because of lack of medical equipment. As a parent who obviously loves their child...would you not at some point realise the difference between a potential life and...a body? And stop preventing other peoples' children from getting a chance (a real chance) at life.

Sounds extremely harsh, and I apologise for that, but for the sake of debate things need to be described in a less sensitive way. :/

 

[Domestika]

Without a brain, is the child really suffering? I am ignorant on a lot of brain stuff. Where are the pain centers located?

Personally, and this is totally personal so nobody needs to agree with me, I still feel that they are human and deserve the rights of any other human even if they lack the higher brain function of an intact human being. I still feel that they have a human spirit, and their life is as sacred as any other human.

I believe that everybody is born for a purpose. Sometimes that purpose isn't to learn something themselves, but to teach others. Teach them lessons about compassion and humanity.

If it was my child I would carry to term. In my religion, we believe that families exist as an eternal unit. My husband, children, and I are sealed together for time and eternity. Even if my child was born with no brain and died hours later, their spirit would remain a part of our family and we would meet them again when the time came to pass on ourselves. And they would be whole. This, being a religious belief isn't shared by many, but I do feel strongly that it is a decision to be made by the parents.

I also feel that denoting encephalic babies "sack of organ" status is treading a dangerous slope. At what point would that extend to other humans whose brain activity has ceased? What if new treatments for encephalopathy emerge using stem cell technology? Or other new technologies?

I appreciate hearing your viewpoint.

 

[GlassOnion]

I didn't read the whole thread, so this may have come up already.

But to me, it's the same reason we euthanize our dogs when their quality of life has degraded to a certain point. The child has no quality of life, at all. They're alive, but they don't 'know' it. Many of us don't even have memories of when we were 2 years old. So for the kid, it effectively never existed except to other people.


Edit: Ok I read the thread now.

but if it's just about quality of life... does that mean everyone who has no chance of surviving something just be left to die? I mean ZERO chance. like the car accident victim who is essentially only being kept alive by machines.... should we just say no and take those devices away because they aren't going to live anyway? Should the family be denied access to the machines that are keeping this person "alive" I mean they aren't REALLY alive right? their brain can no longer perform even the instinctive duties like breathing and such. So should ALL people who have ZERO chance of living not be allowed to be put on these machines?

Well, personally I don't feel they should if they have zero chance of living. Let's be real: the only reason that a person in that state is being left alive is because the relatives can't accept the truth, that they are for all intents and purposes dead.

But at least those people have brains, and there's been miraculous recoveries before from such a state. But they're few and far between.


A kid with no brain is a completely different matter. It has absolutely NO chance of a miraculous recovery. You can't function except at the very basic of levels with just a brain stem. I don't think that even stem cells could grow a whole new brain once outside the womb (when everything is 'wired' up and working).

 

[Domestika]

I didn't read the whole thread, so this may have come up already.

But to me, it's the same reason we euthanize our dogs when their quality of life has degraded to a certain point. The child has no quality of life, at all. They're alive, but they don't 'know' it. Many of us don't even have memories of when we were 2 years old. So for the kid, it effectively never existed except to other people.

The sad part, to me, is that you can't change your mind later. You either terminate the pregnancy to prevent future suffering/heartbreak, or you accept everything that happens. You can't wait until the child is born, see it suffering and go "whoops, probably shouldn't have done that". Then you have to see it through and live with it.

I think a lot of people would change their mind about carrying to term once the child is born, if they had the option. Particularly if the child is in a really bad state and spends it's 3 minutes on earth turning blue and gasping for breath. But of course that's just my guess/opinion.

 

[Dizzy]

I think it is selfish to keep a body alive because you can.

It's an emotional decision, not a rational one.

 

[Fran101]

Keeping a person alive who was in a car accident IS A TOTALLY DIFFRENT THING. this person has thoughts, memories, a personality.

a baby with no brain is just.. an empty shell. what they are doing IS NOT "living". it is simply barely functioning.

and i agree that keeping this "baby" alive to me would be considered selfish..
I wouldn't even carry it to term

But these babies dont "go" peacefully, they turn blue, gasp for air, and usually die that way.

and i think what those parents did, PROLONGING this for 2.5 years, keeping this alive, .. was cruel and pretty selfish of them.

 

[CaliTerp07]

I can't say what I'd do, because I've never been pregnant or had a child, and I know that people don't think rationally about their children in times of distress--it's all emotional. I'd be a basket case, and who knows how I'd respond?

That said, in my lucid distress-free state I currently reside in, I can't see I see a purpose to keeping the child on life support. It's a terrible, awful situation...but there is absolutely no hope of ever living life and experiencing the joy that is supposed to be our time on earth.

 

[Dekka]

I think keeping the child alive is a drain on medical resources and that the time/space/resources that are spent keeping the shell alive could be used where it can make a difference.

And I agree that people are born for a reason, than even a sack has a spirit or soul... but no where does it say you must keep a shell alive. I don't condone killing them, but let nature take its course and release the spirit from the shell.

My personal experience.... (warning its sad)

I VERY good friend of mine had an accident schooling one of the riding school horses and broke her foot. Whilst in the hospital getting a plate in her foot she some how vomited a little in her sleep and aspirated it. By the time the nurses found her she was brain dead. At 28! This was so unexpected... there was no reason this should have happened.

After it was established that there was ZERO chance of Erin still being 'in there' her parents took her off life support. It was right before Christmas. (I am crying remembering that time now) I was newly a parent at that time and I thought then, and still do, that I hope I would have the courage to do as her parents did. It was hard on all of us, but I can't imagine making the descion to let my child go. But I can't imagine letting them stay.

 

[Lilavati]

If this is the case I think it is, I'm familiar with it. I wrote a paper for my bioethics class in law school that was centered around anencephaly.

One, it is very, very clear that these children aren't conscious. There's really no quality of life issue, because they don't experience anything. So they don't suffer, but they don't enjoy anything either. Most of them die before or just after birth. This case was remarkable in that sense, that they kept her alive so long.

What was really troubling here was the mother (I never heard anything about the father, I don't think he was there). She refused, absolutely refused, to believe that her baby would not, could not, get better. She kept saying that God would provide a miracle. Don't take this as a knock against religion, but in this case, she was delusional. The insurance company paid for the treatment, not wanting to touch this with a ten foot pole. She, the baby, it was a girl, was kept in a special home, and whenever she went into crisis, she was taken to the infant ICU at the hospital and put on the better respirator. The doctors HATED it . . . that baby was using resources that could be used for a baby that could live, and moreover, a baby that might feel or care what happened to it. There were plenty of nasty legal battles. Finally, inevitably, the baby died.

I think this case is tough, not because of the baby, but because of the mother. She might have been delusional, but she really loved the baby and thought it could be saved. On the other hand, she was using resources that could have been much better used . . . at the hospital, the home, and for that matter, from the insurance company, which given a lot of these cases would have to raise its rates.

The reason I say the baby doesn't make it tough, is that this condition, unlike virtually anything else, means the baby just wasn't there. She couldn't suffer, and she couldn't live. That's where I disagree with the "isn't 2.5 years worth something" argument . . . unlike a child that lives 2.5 happy years and then dies (and that IS worth something) this child was totally oblivious to the love given her. On the other hand, unlike some deformed babies that I think it is cruel to try to save (because they won't get better and are in pain) she wasn't suffering either.

The problem is the mother. She really believed it. She was deeply religious. But she was also very selfish . . . not towards the baby, but towards society. On the other hand, who would feel right telling her that she HAS to let that baby die?

 

[Laurelin]

I know what I would do in that situation but I am really torn...

My cousin's firstborn had this. She chose to carry out that baby to full term and she died a day or so after being born. It was the saddest thing I've ever seen. I've often tried to imagine what they went through, but I just can't. So I don't think I could possibly pass judgment on someone's decision in a situation like that. I think it sounds more cut and dried until you see it or experience it yourself.

I know this is different but putting someone else on life support has been mentioned.. . we did that not very long ago when my mom passed away. When she was rushed to the hospital she was put on a respirator and the next day was declared brain dead with no chance of recovering. I've always thought that would be a hard decision to make, but for us it was surprisingly easy to tell the docs to pull her off life support. Even if she'd miraculously woken up, she'd still have had such extensive brain damage that her mental level had degraded to about a 3 year old. She wouldn't have wanted to live that way. Keeping her alive would've been selfish on our part. But some people had a real hard time with it. My grandma wouldn't let her go and wanted us to keep her 'alive'. In my mind she was already dead, just a body left that was breathing.

Then again, we have a family friend that was in a coma for 10 years and woke up. He's fine now. I can't help but think that I probably would've pulled the plug long ago and then he wouldn't be here now... It's a grey area for sure...

Oddly enough I read this thread and started responding when Em came in and told me that my cousin is pregnant again.

 

[bubbatd]

I doubt if they are trying to keep this baby alive .

 

[corgipower]

The problem is the mother. She really believed it. She was deeply religious. But she was also very selfish . . . not towards the baby, but towards society. On the other hand, who would feel right telling her that she HAS to let that baby die?

I don't think it's fair to call the mother "selfish". The combination of the religious belief and postpartum effects can make it very difficult for some to grasp the reality of the situation.

 

[puppydog]

I doubt if they are trying to keep this baby alive .

That is why the debate was moved to another thread.

 

[Fran101]

I don't think it's fair to call the mother "selfish". The combination of the religious belief and postpartum effects can make it very difficult for some to grasp the reality of the situation.

..but for 2.5 years?

 

[corgipower]

..but for 2.5 years?

Absolutely.

 

[Bailey08]

I think keeping the child alive is a drain on medical resources and that the time/space/resources that are spent keeping the shell alive could be used where it can make a difference.

This is where I ultimately come out.

At the end of the day, it's the only practical solution. There is a finite amount of resources, and that this child is using them means another is not able to. Beyond the respirator, honestly, using insurance money (which, at the end of the day, we all pay for) to keep a child like this alive is draining resources that are already stretched thin.

I don't see the slippery slope argument here. I think it's acceptable to say that hospital resources need not be used for a child without a brain stem and that does not imply that the same answer need apply to a child in a coma or a severely disabled child. In the latter cases, I do think that the parents/guardians of those children have a right to keep their children alive, whatever "we" may think about the inherent quality of life issues (barring any suffering caused).

 

[Lilavati]

Absolutely.

I suppose "selfish" isn't quite the right word, but I didn't want to say "disturbed" or "crazy" either. Perhaps in profound denial, with effects that are objectively selfish, whatever her own feelings and motovations were.

I agree with Bailey that parents should have the right, although in a world with limited resources, there may be times when triage is required, but that should be only in those situations where another life is in danger. However, I also think parents should have the right to refuse treatment, and not have it forced on them because some people believe that we should try to save any life, no matter what its quality or how short it is likely to be. But, I do think that it should, as a general rule be up to the parents, even if my personal opinion might be that it is pointless, or even cruel, to try and save that child.

However, in the case of anencephalics, I have to say that perhaps the parents should have to buy their own infant ICU unit . . . not because I'm cold blooded, but because it is possibly the most hopeless medical condition known, and the child really is oblivious.

Laurelin, I am very sorry to hear about your cousin. I hope it goes better this time. With good care most people do have normal children on the next try.

 

[Renee750il]

Simply, finding any reason for keeping anything or anyone "alive" by artificial means is incomprehensible to me, and, as Jess so succinctly put it, based in selfishness. That's not to say that there isn't incredible pain in letting go, but that is where truly loving someone or something more than yourself comes into play.

Being selfish in that circumstance doesn't mean someone is vile or heartless, just weak.

 

[tessa_s212]

If this is the case I think it is, I'm familiar with it. I wrote a paper for my bioethics class in law school that was centered around anencephaly.

One, it is very, very clear that these children aren't conscious. There's really no quality of life issue, because they don't experience anything. So they don't suffer, but they don't enjoy anything either. Most of them die before or just after birth. This case was remarkable in that sense, that they kept her alive so long.

What was really troubling here was the mother (I never heard anything about the father, I don't think he was there). She refused, absolutely refused, to believe that her baby would not, could not, get better. She kept saying that God would provide a miracle. Don't take this as a knock against religion, but in this case, she was delusional. The insurance company paid for the treatment, not wanting to touch this with a ten foot pole. She, the baby, it was a girl, was kept in a special home, and whenever she went into crisis, she was taken to the infant ICU at the hospital and put on the better respirator. The doctors HATED it . . . that baby was using resources that could be used for a baby that could live, and moreover, a baby that might feel or care what happened to it. There were plenty of nasty legal battles. Finally, inevitably, the baby died.

I think this case is tough, not because of the baby, but because of the mother. She might have been delusional, but she really loved the baby and thought it could be saved. On the other hand, she was using resources that could have been much better used . . . at the hospital, the home, and for that matter, from the insurance company, which given a lot of these cases would have to raise its rates.

The reason I say the baby doesn't make it tough, is that this condition, unlike virtually anything else, means the baby just wasn't there. She couldn't suffer, and she couldn't live. That's where I disagree with the "isn't 2.5 years worth something" argument . . . unlike a child that lives 2.5 happy years and then dies (and that IS worth something) this child was totally oblivious to the love given her. On the other hand, unlike some deformed babies that I think it is cruel to try to save (because they won't get better and are in pain) she wasn't suffering either.

The problem is the mother. She really believed it. She was deeply religious. But she was also very selfish . . . not towards the baby, but towards society. On the other hand, who would feel right telling her that she HAS to let that baby die?

I have to 100% agree with this. I have no strong opinion either way as to the actual child. It isn't suffering, but it also isn't living. I don't think I would personally feel as if it'd be worth anything at all to keep the baby alive on machines with no functioning brain. However, if someone wants to believe that God will provide a miracle, I'll keep my mouth shut. My only true, very strong voice of opposition would be the fact that the ventilator would be used on this baby when other babies may need it.

 

[zoe08]

I haven't read this whole thread, but I am with Romy.

For those that say "let nature take it's course". Abortion is NOT nature.

I personally would carry to term, even with the knowledge my baby would not live for long. However with such a serious condition I would chose to spend what little time with my baby with no wires attached.

However it is a parents choice. And to those on the outside, to whom that infant means nothing, it is easy to say they should abort, or not give medical treatment. Especially those people who do not have children of their own. I absolutely cannot imagine the hurt those people are going through, and would not judge them for the way they feel, because I cannot imagine how hard it must be to give up hope that your child will survive.