The Implications of being Born Without a Brain

[huck]

@John_Stamos_Left_Ear

Who said force? As long as it is paid for with private insurance, donations and/or cash, I don’t care what they do. I am allowed to say I wouldn’t do the same.

You are. I thought by your references to “policy” you were contemplating some sort of statutory or regulatory prohibition against benefits,be they “private” health insurance or public aid, being paid to cover bills of an anencephalic child who survives.

[Anaamika]

I read a wonderful book several years ago about severely disabled children like this, and the choices the doctors and the parents made after the birth. One of the things that really struck me is that if you want the baby to die, you have to essentially starve it to death. You can’t just give it some drugs and let it go peacefully.

Let me see if I can find the book…
Ah, I think it was this one: Should the Baby Live? The problem of handicapped infants (studies in bioethics).

I highly recommend it. It’s hard reading, but eye-opening.

[Skammer]

I had a Religion professor who, in pro-life discussions, would say of people with this type of condition, “My dog is more of a person than she is.”

[John_Stamos_Left_Ear]

@Anaamika

One of the things that really struck me is that if you want the baby to die, you have to essentially starve it to death. You can’t just give it some drugs and let it go peacefully.

Except that doctors say it is a peaceful death. This is from an article that ran during the Terri Shiavo kerfuffle. The link is to the message board at otherwise useless Free Republic which copied it in its entirety and I couldn’t find another version of it not behind a paywall:

Removing a feeding tube from a patient who has no hope of recovery is a common practice that leads to a peaceful death, doctors say.

She won’t be aware of thirst, hunger or suffering, because the parts of her brain that create awareness were destroyed 15 years ago, according to the doctors who have examined her.

Schiavo will die of dehydration – a common end for patients with no reasonable hope of recovery, and one widely believed to be essentially painless.

Patients who, unlike Schiavo, are conscious to begin with, lose consciousness about a week after the tube is removed. The body’s systems fail in the following days, leading to ‘‘a sort of peaceful slipping away,’’ said Dr. John Kuluz, a University of Miami expert in pediatric critical care and brain injury.

Removing feeding tubes ‘‘happens all the time,’’ said Dr. Douglas Katz, a Boston University neurologist. ``It’s a common procedure in people who have hopeless medical conditions.‘’

‘‘Even though some of the pathways for sensation are intact up to a point, the part of the brain that processes information about sensation and feeling is not working,’’ Katz said. ``A person who is unconscious or in a vegetative state cannot have any sense of discomfort or suffering.‘’

Even for patients who are conscious to begin with, death by dehydration appears peaceful, according to a study published in 2003 in the New England Journal of Medicine.

A survey of 107 hospice nurses who cared for terminally ill patients who chose to die by refusing food and water found that ``most deaths . . . were peaceful, with little suffering.‘’

While it may not be the case for all patients whose water and nutrients are stopped, for patients with Hydrocephalus as severe as Shiavo had and this baby had, you don’t need drugs and the end is peaceful.

[John_Stamos_Left_Ear]

@huck

You are. I thought by your references to “policy” you were contemplating some sort of statutory or regulatory prohibition against benefits,be they “private” health insurance or public aid, being paid to cover bills of an anencephalic child who survives.

I never used the word “policy” in any post I have made. Possibly you are confusing me with someone else in this thread.

[Anaamika]

@John_Stamos_Left_Ear

Except that doctors say it is a peaceful death. This is from an article that ran during the Terri Shiavo kerfuffle. The link is to the message board at otherwise useless Free Republic which copied it in its entirety and I couldn’t find another version of it not behind a paywall:While it may not be the case for all patients whose water and nutrients are stopped, for patients with Hydrocephalus as severe as Shiavo had and this baby had, you don’t need drugs and the end is peaceful.

I have heard the same thing…and the book I recommended had a lot of good points to make on this topic, but it still seems to me there might be an easier way. But who’s going to ask doctors and nurses to inject killing drugs into a baby?

Anyway, please read the book. It addresses these topics far better than I could.

[ralph124c]

What about a public figure…like Ariel Sharon? He was kept on life support for years-why?

[huck]

@John_Stamos_Left_Ear

I never used the word “policy” in any post I have made. Possibly you are confusing me with someone else in this thread.

I beg your pardon, I did mix you up, with Monstro.

[John_Stamos_Left_Ear]

@Anaamika

I have heard the same thing…and the book I recommended had a lot of good points to make on this topic, but it still seems to me there might be an easier way. But who’s going to ask doctors and nurses to inject killing drugs into a baby?

First of all, we’re not. We are asking doctors to remove the feeding tube which causes expiration to to dehydration.

Secondly, you seem to be operating under the assumption that doctors would fall prey to emotions. Any doctor seeing a CAT Scan which shows a liquefied cerebral cortex should not have the same “but it’s a BABY” emotional response that you or I might. It sucks, of course, but so does removing the feeding tube from anyone that you wish were still alive and actually there (but isn’t and will never be).

[vivalostwages]

The English in this post, from “500 questions about God and Christianity,” is a bit broken, but the content should give us pause:

I write this with my 25 day old princess suffering with her breaths while lying on my chest.
Once a firm believer in one universal god has lost all faith in him in last 25 days. My girl has been without food and water since she is brain damaged with just brain stem intact.if we put feeding tube she will die in worse manner . Last 50 hours she had atleast 35 periods where she stopped breathing turned blue no pulse for 8-10 mnts and then suddenly take deep breaths only to more coarse breathing ,me and my wife have died each one of these periods… THERE IS NO GOD… IF HE IS THERE SHAME ON HIM… I have come to realize our body is all science way we function and way we think.
Thank you for this article

All of you who give reasoning why God causes children to suffer I want to let you know I was like you .
It is easier to say than to experience first hand with your own child. I hope you all don’t have to go through this cause I would not even want my worst enemy to go through this then why would your so called GOD inflict upon 10 million parents snd children every year???

[Anaamika]

@John_Stamos_Left_Ear

First of all, we’re not. We are asking doctors to remove the feeding tube which causes expiration to to dehydration.

Secondly, you seem to be operating under the assumption that doctors would fall prey to emotions. Any doctor seeing a CAT Scan which shows a liquefied cerebral cortex should not have the same “but it’s a BABY” emotional response that you or I might. It sucks, of course, but so does removing the feeding tube from anyone that you wish were still alive and actually there (but isn’t and will never be).

No, that’s my point. Instead of removing the feeding tube, the book makes many points about a more active rather than passive way of doing so.

And of course doctors have emotions. What are you, nuts? They don’t have to have the “It’s a baby” emotional response…they could just be responding to the parents, or giving the news, or any number of things. This stuff is all in the book as well - the varied and complicated things that doctors, nurses, patients and parents go through. And you bet your ass the doctors and nurses interviewed were extremely hesitant to give killing drugs. Maybe you wouldn’t have any problem with it, or any number of doctors, but obviously it’s a concern.

These aren’t my points. These are pretty much as I remember them from the book.

[TokyoBayer]

I’ve hesitated to post on this thread because of the personal nature. Our first child had a quite similar condition which was fatal. We had know somewhat prior to the birth that there would be problems, but the exact extent could not be determined until he was actually born.

We had elected to not have invasive treatment and he died within several hours of his birth. It was traumatic and I don’t really want to go into that again.

We attended a support group for parents who lost babies and heard many stories and saw the pain which they also suffered.

That was actually the third person for whom I had to participate in the decision of medical care to determine to prolong life or not. My grandmother had had a stoke and was brain dead. Despite a DNR (do not resuscitate) order at her nursing home, the staff had started emergency care and once that was in place, it took a family order to stop. The family was in complete agreement that removing the life support was the best course of action.

The second was when my father was in the final stages of his cancer and my mother and I had to select which treatments at the end. Again, we elected to not prolong the inevitable.

For our son, the emotional component was so completely different it is impossible to comprehend, let alone provide a description meaningful to anyone who has not had that experience. There is an emotional connection which cannot be adequately explained.

I’ve generally found that the certainty of one’s belief in their answers seems inversely proportionate to their experience.

[nearwildheaven]

@TokyoBayer

I’ve hesitated to post on this thread because of the personal nature. Our first child had a quite similar condition which was fatal. We had know somewhat prior to the birth that there would be problems, but the exact extent could not be determined until he was actually born.

We had elected to not have invasive treatment and he died within several hours of his birth. It was traumatic and I don’t really want to go into that again.

We attended a support group for parents who lost babies and heard many stories and saw the pain which they also suffered.

That was actually the third person for whom I had to participate in the decision of medical care to determine to prolong life or not. My grandmother had had a stoke and was brain dead. Despite a DNR (do not resuscitate) order at her nursing home, the staff had started emergency care and once that was in place, it took a family order to stop. The family was in complete agreement that removing the life support was the best course of action.

The second was when my father was in the final stages of his cancer and my mother and I had to select which treatments at the end. Again, we elected to not prolong the inevitable.

For our son, the emotional component was so completely different it is impossible to comprehend, let alone provide a description meaningful to anyone who has not had that experience. There is an emotional connection which cannot be adequately explained.

I’ve generally found that the certainty of one’s belief in their answers seems inversely proportionate to their experience.

Nobody knows how they will react to any situation until it happens to them. Hugs to you.

[nearwildheaven]

@John_Stamos_Left_Ear

As a society, we don’t seem to afford human beings the same rights that we do as we do dogs and cats with regard to humane euthanasia for those who are suffering. That’s why what Jack Kevorkian does is so controversial.

Jack Kevorkian died a few years ago.

Some people wondered why he didn’t use his own suicide machine on himself.