Saturday, May 31, 2008

Tough Decisions

I recently posted that I was going to do this, so here goes.

A recent controversey in the blogosphere got me thinking. I very much want a child. But is there any circumstance under which I would choose to terminate my pregnancy? The answer, dear reader, is yes. You may find me selfish, but I am who I am.

I have an acquaintance who has a profoundly disabled child. The child will not live much past the age of 10. One of the child's parents once relayed to me that the hard part of having this child is not watching the child go through life with these disabilities. Indeed, although the child doesn't experience anything like healthy children do, the child appears happy and loving at the level the child is able to exist at. The parent relayed to me that the hard part is dealing with the parents' own expectations, dealing with the fact that this child will never walk or talk or go to the prom. The parent said that if you just live in the moment and enjoy the child for what the child is, it is an enjoyable experience. . .it is when you start to compare the child to a healthy child, when you start to think about what is missing and all of your own hopes and expectations, that it becomes unbearable. I consider this parent one of the most noble people I've ever met. I totally get where this person is coming from. But if I had a choice, I wouldn't choose that for myself or my child.

I have other friends who had a child die before the age of 2, to a horrible deadly genetic disorder neither knew they were even carriers of. It's one of those weird things that about 4 people in the world have. They can never have a child together, as there is no way to test the embryos for the disease. Needless to say, they have been devestated by their experience. While their child brought great joy into their lives for the short time this child was here, the fallout has lasted so much longer. Seeing what they've been through, I just can't imagine choosing that for myself.

If I discovered during pregnancy that my unborn child definitely had a serious birth defect, I think I would choose to terminate. This is bound to sound cold and calculating, but there is a big world out there, and a finite amount of resources available. I don't see the point in bringing a life into this world who will require hundreds of thousands of dollars of medical care, and may never have particularly good quality of life. There are so many living, breathing children in various parts of the world who die horrible deaths because they don't have very basic things, like clean water or sufficient food. I think it is nutty that because I live where I do (and have the fab insurance that I have) I could call upon the medical profession to pour resources into a single child, who they may never be able to make well. I don't believe in life at any cost, unfortunately. I sort of wish I did. But why should I be able to do this, because I have the benefit of living in a wealthy nation?

I am officially of "advanced maternal age." I am at that age when the risk of birth defects skyrockets with every passing month. I don't know how I'll feel, if I am actually faced with any of the aforementioned scenarios. I do know that if/when I get PG again, I'll be having every test possible, so that I can get as much information as possible, so that I can make the best informed choice possible.

18 comments:

Io said...

I don't think that's selfish - I think that's just a hard, terrible decision that individuals have to make. And I'd probably make the same ones as you.

Christy said...

I don't think you are selfish at all. Everyone needs to know what their own limits are, and every situation is different. I hope this is a situation you will never be faced with.

Just visiting from NCLM . . .

Jill said...

Hey there! I don't think it's selfish. I will be asking my new RE about CGH testing. This is new genetic testing and is actually better than PGD b/c it tests all 23 chromosomes and doesn't harm the embryo as PGD can. Just thought I'd share in the event that genetic testing might be something you're interested in...

Jamie said...

No, I don't think your selfish at all. It is one of those awful situations I hope I am never it, but I would make the decision if I had to.

After the emotional toll of trying to conceive, I can't imagine what it would do to us to raise a child who had such serious medical disabilities.

Busted said...

Not selfish at all. Regardless of the story beforehand, there are some very legitimate and emotional reasons to make the decisions you set forth in your post. I can't say with any certainty that I would do any differently. We did, after all, decide to forego the intervention when our Doodle were born, and I am at peace with that decision.

Mara said...

I agree with the other commenters that I don't think you are selfish at all for having this viewpoint. Being in a situation like that is incredibly difficult, and having to make decisions takes time, patience, and a deep understanding of yourself and the world around you.

I certainly hope that you will never be in a situation where you will have to make that choice.

Beth A. said...

I don't think it's selfish, I think it's just a matter of trying to figure out where your particular line is drawn. It's such a difficult decision, especially if you know there are genetic diseases in your family. It's easy for me to decide that it's worth it to have children even if they might develop Alzheimer's disease in their 50s like my father, but if they would only live to 8? Or 2? It gets so much harder, and I'm not sure I could really know until I was in the situation. Hopefully none of us will ever have to make those decisions.

Sunny said...

Here from NaComLeavMo. I think it's great that you are tackling these subjects in your blog, I'm all for open discourse! Honestly I can't say what I'd do in this situation. I imagine my husband would be against termination, as I couldn't even convince him to do IVF (he's concerned with the ethical ramifications of the frozen embies). I'm inclined to agree with what you say -- hopefully neither of us will ever have to know the heartbreak of such a decision.

Briar said...

Here from NCLM.

I am not quite of advanced maternal age but we wanted testing because we felt the same way. After I had a miscarriage due to trisomy, we felt even more strongly about it.

The amnio was the best thing we could have done. Finding out that the baby was chromosomally healthy was the best moment imaginable. I was only able to really bond with the unborn boy after that.

I can't imagine the hell it would have been if we had received news that would have meant termination for us. But I am a big believer in more information always being the better option.

Mrs.Joyner said...

Also here from NCLM...
What a choice to have to make. I don't think you are being selfish at all..it's just something you hope you never have to do..I think, if I were in that situation, I would do the same thing..I just hope it's something I don't ever have to deal with, or you either.

Juicy said...

I don't think you're cold or selfish. I'd do the same thing. It's your life and your decision. Only you can make the decision that works for you and whatever you decide is the right thing to do. That's how I feel anyway.

(here from NaComLeavMo)

smartypants said...

This can be such a controversial subject, but I totally agree with you. You can only do what is best for yourself, and you should not be judged for doing so. I don't think I would have the courage or strength to deal with the situation your friend is in. Kudos for you for your convictions

DC said...

Your friends have been through some tough times. I cannot imagine losing my two-year-old or having a profoundly disabled child. Thank you for talking about this and for making us all think.

JuliaS said...

Here from NCLM.

Interesting and thought provoking post. I am not sure what I would do - I know it would be a devastatingly hard decision to have to make. Hopefully a situation where decisions like that need to be made will never arise.

Good wishes.

Jendeis said...

Thank you for blogging about this tough subject. I have struggled with similar thoughts.

Mindy said...

Hi -- here from NCLM. Not only do I think your not selfish, but you're pretty brave for posting your thoughts on this. Thanks for sharing them.

Kim said...

I don't think it is selfish at all. That story really made me cry. When they let him bat at the end I really lost it! We have 3 boys thru fertility treatments. We are in the process of adopting from South Korea and even though I know accepting medical conditions and special needs will get us a referral quicker, we pretty much chose to accept nothing but a healthy child. I think the decision is in part made because I have three healthy children and I don't feel that it is fair to choose to change their lives. And possibly have them responsible for a sibling for the rest of their lives. I also know there are no guarantees and only of our children could develop something in the future. But everyone is different in what they can handle and what they think is right for them. NCLM

Geohde said...

It's always a very sensitive and personal decision to make.

My first baby had an anomoly that would have been unquestionably lethal at birth, and we elected not to continue with the pregnancy. Could I make the same decision again, if it recurred?

I don't know.

J