Saturday, December 13, 2008


I am currently reading Choosing Naia: A Family's Journey. It's very good, absolutely engrossing. It's the true account of a couple who find out about halfway through the wife's first pregnancy that their baby-to-be has Ds, and their struggle to make a decision as to whether to continue the pregnancy or to terminate. I know the book has a happy ending; the title of the book assures me of that (and I've googled the family to find follow-up information). But almost halfway through the book, they are still struggling with their decision, and they are under a time limit. If they choose to abort, they have to do so by 24 weeks gestation, and where I'm at in the book at this point, she is about 23 weeks along and running out of time.

It's painful to read about their decision-making process. Before they find out that their baby has Ds, the ultrasound reveals a serious heart defect common with Ds and which is also a soft marker for Ds. After they learn that their baby does indeed have Ds, they begin agonizing over whether to continue the pregnancy or not. At one point, they decide that they will only terminate if they learn that the heart condition is fatal. They talk to several experts, including a couple of highly respected pediatric cardiologists, who assure them that while the heart defect is serious, the success rate of repair surgery is extremely high, so they should not consider it a fatal defect. The couple flip-flops on their decision over and over. They agonize over just how mentally retarded their child might end up being. At one point, they contact a woman who acts as a liason to place babies and children with Ds for adoption. The father asks the woman, "What if it takes 2 or 3 years to determine the extent of mental retardation . . . could we place him/her up for adoption then?" I can't fathom even considering the option of adoption as a way of relieving oneself of the burden of a child that you've already given birth to and raised for 2 or 3 years. It's just really hard to imagine that thought process.

I know the couple end up choosing to continue the pregnancy and keep their baby. Happy endings.

I've blogged about this topic here before - termination of pregnancies with a prental diagnosis of Ds . . . so this is really, I guess, a rehashing of stuff I've already talked about. But it's just really difficult to read about another person's experience with it without examining your own feelings on the matter, you know?

I realize I sound judgmental. I guess I'm feeling judgmental. Horrified is more like it. I like to think (and I do honestly believe) that I would never have considered termination had I known early enough in my pregnancy to have that option that Finn had Ds. I don't know . . . I've had ultrasounds as early as 6 1/2 weeks gestation that showed a beating heart, and that's all it took for me to think of the tiny being growing inside me as a person, and one that I loved, very much wanted, and would do just about anything to protect. I can't imagine actually agonizing over whether or not to continue a pregnancy at a point far enough along in pregnancy that I would have already been feeling the baby move around for several weeks. I suppose if I knew that the baby had a catastrophic diagnosis, like anencephaly, it might be a different story. I suppose then I would agonize over it.

But, as I've said before, I didn't know about Finn's Ds until after he was born. I'm glad about that for many reasons. Not knowing allowed me to revel in the joy of being pregnant without the fear and sadness that knowing I'm sure would have brought down on me (because I know me). And really, despite my honest belief that I never would have considered termination had I known beforehand, I'm glad I was never faced with that choice. The choice seems to me to be quite a heavy load to bear. While the couple in this book don't seem to have been pressured by their doctor(s) to terminate, they did face pressure from family to terminate. Can you imagine?

It's tragic to me that we seem to be living in an age of disposable babies. This isn't based on my religious convictions - I don't have any. And I've always considered myself to be pro-choice . . . but being pro-choice, I'd like to see people making better choices, you know? It's hard to swallow the fact that there are people out there who have stable lives, are in a stable financial position, and choose to terminate pregnancies because they can't imagine a special needs child fitting into their lives. It seems horrendously selfish. But maybe in those instances, a child would not be served well by those kinds of parents.

I'm not sure what the benefit really is of knowing beforehand. Preparedness, I suppose. But then you're faced with the choice, the decision. Even if you have strong convictions one way or the other, the decision still must be made. Feelings must be examined and weighed. If third parties are privy to the information about the baby, at least some will undoubtedly offer their opinion about the decision that should be made, even if their opinion isn't solicited.

One of the doctors in the book I'm reading says something to the effect of this: when a prenatal diagnosis is made, at least for a time, that's all the parents know about their baby - that he or she has DOWN SYNDROME. For a while, the baby inside, who is a complete mystery, becomes the diagnosis. On the other hand, when birth precedes the diagnosis, the parents get to meet the baby before the diagnosis. And really, who gives birth to a baby they wanted all along, find out after the baby is born that he or she has Ds, and suddenly feels like maybe the baby never should have been born? I don't know. Maybe I'm being naive - maybe some parents do feel that way.

Anyway, I'm not suggesting that prenatal testing should be done away with. Or even that abortion should be done away with. I'm just saying it's a slippery slope.

The mother in the story recently wrote an article in which she states that she is glad that she had the choice. I think it is interesting to note, however, that she declined any prenatal testing during her subsequent pregnancy.


Liz said...

"but being pro-choice, I'd like to see people making better choices, you know?"

I loved this phrase. I agree completely and am the same myself.

I think the couple in the book are pretty brave to expose themselves so openly and honestly. I'd venture a guess that many parents who discover that their baby, not yet born, may have a fatal condition, may have a lifelong affliction.

Faith is a hard thing to have in those circumstances. And not necessarily a religious faith. Just faith that everything is happening for a reason... that you are being given this child for a reason.

rickismom said...

I thought that this book was a very good book. I especially was interested in the second half... a lot of interesting stuff, and well-written.

Chrystal said...

Thank you for introducing me to a new book. I have no idea how that one escaped my clutches. I'll have to make that one a priority read in the new year.

I understand what you're saying about being glad you (we) weren't presented with having to make a choice. I like to think that for parents of a child with Ds, whenever they found out is what was right for them. I say that because those I know who received a prenatal diagnosis say that they were glad for it so that they could research beforehand. I know me though and I would have been doing more moping than learning. Thank goodness everyone's not like me.

I could say so much more, but I'm usual.

Take care, mama. Great post.

Amanda said...

Isn't it interesting how some people believe if you are pro-choice, you are basically pro-abortion? I also agree with your statement, as Liz does, that it would be great if people were making better choices. Like I've said in previous comments, we were told that I had a 1/77 chance of having a baby with Ds (the results of the triple screen blood test), and between the time we got those results and the time I had my L2 ultrasound, my husband and I had to really contemplate a life with a special needs child. And I have to honestly say, not for a second, or even a half second, did I seriously consider terminating. (This does not make me a better person than someone who does consider terminating - it was just my personal state of mind.)Although I will say that the genetic counselor we saw during my ultrasound seemed to think I should get an amnio asap so that I would have "enough time" to make a decision before I hit 24 weeks. I didn't get the amnio. I just wanted to finish off my pregnancy happy and not worrying. I don't think they should get rid of genetic testing, not at all. But I wish I knew I had a choice not to get that blood test. I never would again.

Jen said...

A friend gave me that book when I was in the same exact situation. Prenatal diagnosis, heart defect, making the decision, etc. It was a shitty time.

The part that bothered me the most in that book was the passage about the couple who decided to terminate their daughter by inducing early. Labor was induced, the baby was born, and they held her and talked to her even though she wasn't alive. It really, really disturbed me. And I'm pro-choice, but, like you said, people should make "better choices". More informed choices. I don't know.