To treat or not to treat?

[Lilavati]

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.

This thread is more about providing medical treatment to such infants, rather than whether to abort them. That should be another thread. However, I agree with you that it is the parents choice whether to abort. I can see why someone would, and I can see why someone would not. In the case of an infant that is likely to suffer if it comes to term, but has little or no hope of survival, I really do think the right thing to do is end the pregnancy. But I would never, ever think of forcing it on someone. Ever. Indeed, unless I was asked for advice, this is one situation in which I would just shut up if it was happening to someone I knew.

But I do think, strongly, and I am not militantly pro-choice, that anyone who tells a woman carrying such a child that she may not abort it, that she must have it, even with the risk of childbirth (riskier in those situations) and the lack of hope for the child, is cruel, ignorant and barbaric. They care more about the idea that "abortion is wrong" than the actual living woman, or even the welfare of the baby. I've seen (in pictures, not in person, thank God) some of the truly awful things that can go wrong, and hear the horrific stories of pain and torment those babies experience. Not to mention the agony of the parents. (again, this thread is about treatment of babies with a specific defect, where this isn't the case . . . those babies don't feel pain). Forcing a woman, a family, to carry through with such a pregancy supposedly out of concern for an infant that is going to endure great pain and die on a point of principle upsets me a great deal.

That said . . . that really isn't what this thread is about.

 

[zoe08]

This thread is more about providing medical treatment to such infants, rather than whether to abort them. That should be another thread. However, I agree with you that it is the parents choice whether to abort. I can see why someone would, and I can see why someone would not. In the case of an infant that is likely to suffer if it comes to term, but has little or no hope of survival, I really do think the right thing to do is end the pregnancy. But I would never, ever think of forcing it on someone. Ever. Indeed, unless I was asked for advice, this is one situation in which I would just shut up if it was happening to someone I knew.

But I do think, strongly, and I am not militantly pro-choice, that anyone who tells a woman carrying such a child that she may not abort it, that she must have it, even with the risk of childbirth (riskier in those situations) and the lack of hope for the child, is cruel, ignorant and barbaric. They care more about the idea that "abortion is wrong" than the actual living woman, or even the welfare of the baby. I've seen (in pictures, not in person, thank God) some of the truly awful things that can go wrong, and hear the horrific stories of pain and torment those babies experience. Not to mention the agony of the parents. (again, this thread is about treatment of babies with a specific defect, where this isn't the case . . . those babies don't feel pain). Forcing a woman, a family, to carry through with such a pregancy supposedly out of concern for an infant that is going to endure great pain and die on a point of principle upsets me a great deal.

That said . . . that really isn't what this thread is about.

I am not just talking about the choice to abort. I am talking about the choice to treat medically also. That should be the parents choice. No one should force them to carry to term in this situation (and I am VERY pro-life), or to treat medically, but if they CHOOSE to treat medically they should have that right, and not be judged for it. They should also not be forced to abort or not have the right to medical treatment. No matter how bad/sad the situation is.

 

[Lizmo]

I whole-heartedly agree with Zoe. Very good post.

Also, for those you still thinking about the other baby from Nacy's thread, I HIGHLY suggest you read "Summer" by Karen Kingsbury. It deals with the same type of situation very very closely. And it's a wonderful book and will make you look at things differently ( at least I hope it does for some)

 

[smkie]

I took care of a woman that makes me see this from a different perspective. I could pick her up in my arms, she was no bigger then a 2 year old. SHe had the starts of a womanly body, but that was all, the rest was very deformed. SHe had to wear a helmet because she beat her head against the rails of her "Crib" as long as she was awake. SHe never stoppe crying either. I was in my 20's when i took care of her and it shocked me that we were the same age. I cannot think of a worse hell. Let imo the spirit back to the wind to try again .If any one would have asked her i think she would have begged to have never been. I spent 2 years working with the profound mentally and physicall challanged as well. I think we try too hard and it isn't necessarily the right thing to do. IT was not a happy existance even on the most primal level.

 

[bubbatd]

When Jan was pregnant with Nash the ultra sound showed a perfect baby . She didn't go the Amino route because of the chances ,though she knew it would have shown DS. She's very anti abortion and would have gone through it ONLY if the ultra sounds showed that the baby could not have gone to term or would die soon after birth due to major abnormality .

 

[Renee750il]

I completely agree with you Smkie.

Even when there is a parent -- or two parents -- dedicated to caring for this child for the rest of their lives, what happens when the parents are no longer capable? When they are dead? All that's left is an institution. I know people who are facing that spectre . . . they went above and beyond to ensure that their child would survive, and now they are faced with reaching a point where they can't safely care for their child. In one case, he's 20 years old now and growing stronger physically, coping with hormones he has no way of comprehending, and he is, quite frankly, very dangerous at times, to himself and others.

How much anguish is there going to be for parents who reach the stage in their lives when there is no choice other than to institutionalize their child, the child they have cared for all this time? How much more pain, yet to think that you are dying, leaving that child behind? And what about the horror of the child who has lived an entire life with parents' care, and then loses parents and lifestyle in one fell swoop and is left with a strange, cold world?

We're facing all sorts of dilemmas brought about by our ability to preserve and prolong lives that a couple of generations ago we couldn't. I have no idea what the answers are going to be, but I doubt they are going to be very palatable, at least in the foreseeable future.

 

[Domestika]

I completely agree with you Smkie.

Even when there is a parent -- or two parents -- dedicated to caring for this child for the rest of their lives, what happens when the parents are no longer capable? When they are dead? All that's left is an institution. I know people who are facing that spectre . . . they went above and beyond to ensure that their child would survive, and now they are faced with reaching a point where they can't safely care for their child. In one case, he's 20 years old now and growing stronger physically, coping with hormones he has no way of comprehending, and he is, quite frankly, very dangerous at times, to himself and others.

This is basically the reason that if we ever decided to get pregnant we would do every form of prenatal testing under the sun. My husband has two severely handicapped siblings (2 different, unrelated syndromes) so we aren't sure we would even risk it. But if we decided to go ahead and ignore logic (I'm not convinced that adding mine OR his genes to the gene pool is a great idea) we would do everything in our power to know as soon as possible whether or not it was a pregnancy we considered to be viable for our situation.

As someone said earlier...with overpopulation and whatnot it may be getting to a point in the world where it's unintelligent to carry to term a pregnancy that will produce a child who will probably never be able to look after her/himself or enjoy her/his life.

I'm seriously going out of my way to tipetoe around the issue. I'm afraid of offending people so if what I'm saying sounds disjointed it's because I'm afraid of coming across as harsh and insensitive!

 

[Lilavati]

I don't think overpopulation should factor in this . . . these cases are rare. The only thing that should really matter is what the family decides to do.

As for not judging, I try not to. But I'm afraid its human nature. I just try to keep my mouth shut when people have to make choices like this . . . and it makes me very angry when people not only do not keep their mouths shut, but they turn to harassment and violence.

 

[drmom777]

Anencephaly has actually really shaped my views on late term abortions. Long ago, when I was in med school and doing a maternal fetal medicine rotation, a patient came into the clinic at some 30 weeks because of an abnormal ultrasound ( I actually wasn't there for this part) Anencephaly was diagnosed, as the baby's head ended at about eyebrow level. the couple decided to try to carry to term in the hope that they would be able to donate organs, even though that usually doesn't work out with anaencephalic infants. They were looking for a meaning for this pregnancy.

Unfortunately, a few weeks later the mother had a psychotic break. She felt there was a monster inside of her, and it was going to kill her. Things did not improve. there was some concern that she would not recover, even after the pregnancy was over. The family and medical team decided to terminate the pregnancy almost at term.

Thiis is just the kind of thing that pro-lifers most object to. This woman wasn't going to die if she went to term. However, there was a serious risk that she would not recover normal functioning. The baby was, basically, killed, and delivered dead. Further description won't be necessary here, but it was ugly, and sad, and in my opinion, necessary.

The woman did recover, though I am sure she was never the same again, I doubt anyone could be. I would not want to be the one to deny them an escape from this ugly situation, when no viable baby was involved.

As far as it being the parent's absolute right to decide whether or not to treat an anencephalic infant. We really need to remember that there is a finite amount of medical resources available. Currently there are a lot of issues with this with elderly patients at the end of life....but this is pretty much the same thing.

Doctors are treating their patient, the baby, not the parents. If it isn't in the patient's best interest to continue to treat, the parents cannot, IMO, just unilaterally overrule. Confusion on this issue occurs all the time. Relatives are always telling doctors to not tell their patients (usually elderly relatives) the reality of their diagnosis, etc, as if they actually had that right.

Some docs wuill go for that too, and heed the wishes of relatives, instead of taking care of their patients like they are supposed to.

 

[smkie]

I am afraid a great deal of the people i cared for had parents that could not make a "choice" but could not deal with the results of what happened. A large part were in group homes and the nuns cared for a group of the women. Most had a very sad story. Only a few had parents that were still there in a supportive way once they became adults.

 

[Fran101]

This is basically the reason that if we ever decided to get pregnant we would do every form of prenatal testing under the sun. My husband has two severely handicapped siblings (2 different, unrelated syndromes) so we aren't sure we would even risk it. But if we decided to go ahead and ignore logic (I'm not convinced that adding mine OR his genes to the gene pool is a great idea) we would do everything in our power to know as soon as possible whether or not it was a pregnancy we considered to be viable for our situation.

As someone said earlier...with overpopulation and whatnot it may be getting to a point in the world where it's unintelligent to carry to term a pregnancy that will produce a child who will probably never be able to look after her/himself or enjoy her/his life.

I'm seriously going out of my way to tipetoe around the issue. I'm afraid of offending people so if what I'm saying sounds disjointed it's because I'm afraid of coming across as harsh and insensitive![/QUOTE

I sort of agree. not because of overpopulation.. but because I guess "selfish reasons" (not being able to support a special needs child, etc..) . I would do everything in my power to make sure as early as possible that the child im giving birth to is going to be healthy and capable of living a independent normal life. and that means, prenatal testing etc..

 

[Domestika]

Doctors are treating their patient, the baby, not the parents. If it isn't in the patient's best interest to continue to treat, the parents cannot, IMO, just unilaterally overrule. Confusion on this issue occurs all the time. Relatives are always telling doctors to not tell their patients (usually elderly relatives) the reality of their diagnosis, etc, as if they actually had that right.

Some docs wuill go for that too, and heed the wishes of relatives, instead of taking care of their patients like they are supposed to.

Ugh. I had a friend who's father had cancer. For some reason the doctor told the WIFE first and they agreed between them to keep it from him because, in her opinion, he would just be negative and miserable for the rest of his life, as short as it would be. So they just didn't tell him. He found out he had cancer when he was finally ill enough that he had to go to the hospital and died soon after.

Malpractise. Plain and simple.

 

[Domestika]

I sort of agree. not because of overpopulation.. but because I guess "selfish reasons" (not being able to support a special needs child, etc..) . I would do everything in my power to make sure as early as possible that the child im giving birth to is going to be healthy and capable of living a independent normal life. and that means, prenatal testing etc..

I know, it sounds harsh but...not everyone is suited to raising a child or children with several mental or physical handicaps. It may sounds selfish, as though you don't want to be "burdened" by an abnormal child...but I think in some cases it's just a person being realistic.

I think I would be crap at providing a suitable home for a child like. I had a horrible, traumatic childhood and, even at my age, still struggle with basic things like...loving others and...being patient. I think it would be unnecessary suffering for a child with special needs to have NO choice but be raised by someone who couldn't provide them the environment they needed to thrive.

My husband's reasons are a bit different from mine, but understandable. He was raised with two severely disabled siblings and he just wants a "normal" family of his own. Sounds selfish, but one person can only take on so much guilt and sadness. I think he's already had enough to last him a lifetime.

Holy off-topic, Batman!

 

[Lilavati]

Doctors are treating their patient, the baby, not the parents. If it isn't in the patient's best interest to continue to treat, the parents cannot, IMO, just unilaterally overrule. Confusion on this issue occurs all the time. Relatives are always telling doctors to not tell their patients (usually elderly relatives) the reality of their diagnosis, etc, as if they actually had that right.

The problem with "best interests" with serverely deformed babies is that there is a serious dispute over what it means. Anencephalics, arguably, have no interests, but some would say that it is in their best interest to live, because living is better than dead. With other severe deformities and retardation, many would say they are better off being allowed to die . . . but again, many would say that best interests means alive. Although doctors can use their judgement (and often refuse to treat) I do yield to the parents on this. One, because babies, no matter what their health, are legally incompetent, then its either the parents, the state, or a guardian ad litem that has to make the call. Two, because parents, of those choices, in MOST situations, will do what they believe to be best. And in that situation, we really don't have anything but what we believe to be best. Yes, they should listen to the doctor, who has more information, but these are ultimately questions that are philosophical, if not theological. We don't know the right answer, because there isn't one.

As for the anencephalics and organ donation, that's what my paper was on, actually . . . that is another painful situation.

 

[Domestika]

As for the anencephalics and organ donation, that's what my paper was on, actually . . . that is another painful situation.

Are they not able to donate because of the oxygen deprivation?

 

[Fran101]

Are they not able to donate because of the oxygen deprivation?

From what ive read online. their organs are totally normal..its that many parents of these children do not want to donate.

 

[bubbatd]

I hope that people don't think that they can't include Down Syndome into this mix because of me . I will not be upset or offended .

 

[Domestika]

From what ive read online. their organs are totally normal..its that many parents of these children do not want to donate.

Again, another hot topic of debate...

I think donating organs should be mandatory. All viable, healthy and useable organs should be removed from anyone who dies. If you have a religious or otherwise strong objection to it, fill out paperwork to ensure that when you die you won't be harvested. Otherwise, give up the goods to someone who can use them! People die waiting on transplant lists for years while BAJILLIONS of people with perfectly good organs die all the time. Seems so stupid to me. No brainer.

Just my humble opinion.

 

[Domestika]

I hope that people don't think that they can't include Down Syndome into this mix because of me . I will not be upset or offended .

My brother-in-law has very severe Down Syndrome so I'm always very sensitive (maybe overly sensitive) to peoples' opinions about mental handicaps. It doesn't offend me when it's spoken of at all, but from my husband I've learned to be very compassionate about other peoples' opinions of various handicaps.

I've actually been thinking about Down Syndrom a lot while keeping up with this thread. I often wonder if my brother-in-law is not suffering. He was born when testing wasn't very common and my in-laws didn't know until he was born, but had they known...I don't see how anyone could have wanted for someone to live the way he has to live, being unable to speak or understand what people are saying to him, unable to see well or walk on his own. In general, the only human emotion I get from him is extreme frustration. He'll live every day like that until he dies and I think...in a way, that is kind of cruel.

Of course, that's more in the vein of the "should you abort" discussion than the "should you allocate resources" topic that this thread is about. Though the original discussion definitely seems to be a jumping off point for a hundred other questions!

 

[drmom777]

In my limited experience--since thankfully anencephaly is rare, the organs are usually unusable because you have to wait for the baby to stop breathing entirely, or, if you can't get permission to take it off the vent, for systems to shut down.

It is actually not so easy to declare someone with no brain to be brain dead. Even when the parents want it.

So the premium organs, like heart and liver and kidneys are usually gone.