On another maudlin note...DSD and other moms-to-be bewareFollow

WARNING: DSD and other expectant mum's beware, this one might hit a little too close to home for you personally.

Seeing both Jawbox's thread and DSDs reminded me that something else Mr. Ambrya and I are "talking about talking about" is deciding under what circumstances--assuming Ambrya 2.0 does go into production someday soon--we would decided not to continue the pregnancy if something were to go wrong. Our logic is that it's better to discuss this and make the decision before we find out there's a problem, rather than after. Because if we find out that something has gone wrong, it's already going to be a highly emotional time and by the time a lot of these defects can be detected, there's not a great deal of time left to take action before the law says you CAN'T take action, if that's what you decide to do. Better to make the decision beforehand, when it DOESN'T feel like the world is crashing down around you, so that at least you know what your course of action will be.

I really don't want this to turn into another pro-choice/pro-life debate thread. Let's assume the pregnancy is wanted and that there's every intention of keeping the baby. In other words, abortion has NEVER been a consideration before now and never would be under normal circumstances. However, you get an ultra-sound or amnio with results that indicates a problem with the fetus. What is your criteria for deciding whether or not to interrupt the pregnancy?

There are, of course, a range of possible defects, from very mild to very severe.

There's trisomy-21 (Down's syndome) which means the child will be mentally retarded, though there's no predicting to what degree.

There's trisomy-18 which means the baby has a greater than 90% chance of not surviving past its first year of life.

There's Hypoplastic Left Heart Syndome which means the baby is born with only part of a heart and, assuming it survives birth, will need at least three heart surgeries before the age of 2 and a complete transplant before the age of 15.

There's various neural tube defects, which range from Anencephaly which means even if the baby survives to birth, it won't survive more than a few hours afterward, to Spina Bifida which means the child will be physically handicapped (in varying degrees of severity.)

So under what circumstances, if any, would you interrupt? What would your rationale be?

For our part, we're both pretty firm on interrupting if it's a defect that is incompatible with life--and this includes Hypoplastic Left Heart Syndrome, which means if the poor baby survived most of its life would be quite painful and difficult even (if!) after a heart-transplant could be arranged. But we're on the fence about defects which would result in physical or mental handicap. A lot of this is due to the fact that you never know just how severe such a handicap will be--on one hand, it would be a shame to terminate if the child has a chance of living a mostly-normal life, but on the other, if the defect is quite severe, the child could end up in a great deal of pain. And there's really no way of knowing which would be the case.

I guess I would probably consider it if the baby was going to be in horrible pain and die shortly anyway. Beyond that, I guess it would be case by case, emotion or not. I'd rather be emotional I guess.

Nexa

Has nothing to do with what I'm able to deal with. Has to do with how much suffering the baby would have to endure. I wouldn't want to make a choice that was ultimately going to cruelly subject a child to a life of suffereing just because I was too selfish to let go.

I can't comment on most of those conditions, but I have spent a good bit of time with mentaly handicapped children/adults/teens. My brother is slightly mentaly handicapped, and still lives a life he enjoys very much. I'd actually go as far as saying he's by far the happiest person I'm close to.

Childhood can be rough with how cruel children can be, but from what I have seen the majority don't let their handicap stop them from enjoying their lives. I'm not saying this is always the case. I have also met some of them who are quite angry and depressed with their hand in life.

I like to think that I would just know. Not emotion, but a gut feeling. I would literally consult my gut and tell the father "this is what I think we should do" I would hope he would concur, but if not, I'd err on the side of giving the child a fighting chance.

Personally, I'm not the kind to ask to be taken off a respirator:I'm leaving this life with some kind of a fight, so I'd expect my offspring to get at least 50% of those genes.

I've been around kids with Down's syndrome and spinal bifida, and while neither condition is to be envied, for the most part, both are survivable.

I say "for the most part", because frankly kids with Down's seem to be really loving and good natured, in my (limited) experience.

At any rate, neither is a condition I'd consider aborting if that were the only consideration.

Something that is not survivable or that would result in a Hobbsian existence ("solitary, poor, nasty, brutish and short") would make me consider abortion.

As to what I would actually do, I have no idea. I certainly wouldn't go into the appointment with an attitude of "if it's bad news, go ahead and do a D&C".

I like to think I'm dedicated enough to the idea of being a parent and loving the child that comes to me that I can handle it. I just am afraid of my own selfish desire to have a child--any child--overriding my sense of doing what would, in fact, be best for the child, resulting in a situation where MY determination to fight prolongs a helpless person's suffering. And having witnessed how a doctor's lies can make a person's remaining life and subsequent death much more traumatic than it would have otherwise been, in such a situation, you can't really trust the doctor when he or she says, "it's better to get treatment."



Unfortunately, it's a sad fact that often the treatment is worse than the disease. Also, I'm not sure you always get this choice. I can't remember where I read the personal account (I think, but I'm not sure, it was at http://www.aheartbreakingchoice.com)
but apparently in some places, you aren't necessarily allowed to refuse treatment for your child after it's been born, and let nature take its course.

So let's say in the case of HLHS, which would require three surgeries before the age of two and a life expectancy of no greater than 15 years if a transplant cannot be obtained. These statistic assume that the child 1) survives birth, 2) survives the surgeries (about a 50/50 shot with every surgery) and 3) manages to obtain a heart and has no other comorbidities (such as Down Syndrome) which would disqualify it from receiving a transplant. The surgeries, while they will extend the child's survival, would require a long, painful recovery period. The child would NEVER have the ability to engage in normal kid-level physical activity, and because the surgeries themselves are merely pallatative and the transplant is STILL required or the child is going to die before the age of 15, the fun doesn't stop there. Even if the transplant takes place, again it's going to be a long, slow, painful recovery, there's no guarantee the heart will grow with the child which may require another transplant down the line, and there will always be immunosuppressants and other drugs and treatments that will make life difficult for the child.

All of that is not what scares me--what scares me is the idea that I might not have a choice in the matter, that if the baby is born and I can see he/she's in chronic, terrible pain and will not have a quality of life that would make life actually worth living, I won't have the choice to say, "Let's refuse treatment and let nature take its course." That the law and medical establishment will basically dictate that I HAVE to let them subject my child to procedures which, while extending his/her life, will ultimately also cause him/her more suffering That the doctor's themselves might be so overzealous to do what they do that they mislead us about the level of suffering and quality of life we can expect for our child (unfortunately this is a very common occurrence which has already impacted my family in the past) and give us false hope when what would really be best for us is honesty.

I don't think the legal part will be much of a concern living in Oregon, but who knows if we'll be living here if by some horrible chance such a situation ever arose. This isn't to say that I'd go into getting an ultrasound expecting such a thing to happen, quite the opposite--the fact of the matter is, even though these are some of the most "common" birth defects, they're still not all THAT common. It's more a situation of "well, I better think about what I'd do NOW rather than be completely unprepared in case it should happen." Because honestly, I can't think of a more awful situation than being completely unprepared when, at 22 weeks pregnant, we find out the fetus has a defect which is going to condemn the baby to a very short life of intense pain, and then having less than 2 weeks to make a decision and implement it before the 24-week limit on termination takes the choice out of our hands.



Edited, Jul 26th 2006 at 2:27pm EDT by Ambrya

But, is haw ok?

HAahahahahahahaaaaaaaaaaaaaa

Speaking on Spina Bifida:

When my aunt was pregnant, her doctor informed her fairly early that her child was afflicted in this way. She spoke with other doctors in the hospital, and they all said that the child was unlikely to live to term and much less likely to survive a year.

Family prayed, doctors claimed doom, gloom and certain death (was really freakin depressing), girl was born with no feeling below the waist.

The doctors still said she wouldn't live past 1 or 2, and if she did, she would be a shut-in invalid and a burden on the family for life.

She was walking with leg braces at age 4, graduated high-school a few years ago, works a full time job and is celebrating her first wedding anniversary this year.

The beautiful, intelligent young lady that is my cousin possibly has the sweetest demeanor I've ever met (and her husband most definitely agrees).

I pray I do never have to make such a decision.
But my decision would depend on whether the child has a chance of ever having something like a happy life. If this chance is not present, then I would abort pregnancy even if that kind of decision would cause nightmares for the years coming.
Answer sounds simple, but I believe its very hard to decide whether that chance exists or not.
This heart syndrome for example, the baby's chance of survival is not very great, but its there. A lot of pain is involved troughout all those surgeries. But if all goes well, the child has every chance of living a happy and succesful life. Mental disabilities either do not prevent a happy life. It will only be different from the life we know, but it will not be in agony and pain.

I believe there are only very few situations in which I would decide to not have the child.

This applies to anything, not only babies.

...Not to mention his diet.