Ok, I'm going to risk offending some folks here. I was on the bike at the Y, reading People when I should have been reading something for school, and I found an article about a family who sued their OB-GYN after their daughter was born with spina bifida. Theirs was a "wrongful birth" suit. I can't find that article online, but here is a link to a similar story on the CBS site.
To start -- I don't have a disabled child, and I can only imagine how difficult it would be to parent a child with significant medical issues. OK, I really can't imagine, to be truthful. There's the disclaimer.
But I guess I was struck, initially, by the wording of the thing. What does it mean for a child's birth to be "wrongful"? Is that the same as just plain "wrong"? Is there a difference between the birth being wrongful, and the life itself being wrongful? Does this mean that the child's existence is wrong? How blurry are the lines of distinction between these questions? The excerpt below raises a key concern:
“It seems as though we're questioning not only the value of life, but the value of people who are not perfect,” says Anita Allen-Castellito, a law professor at the University of Pennsylvania and a bio-ethicist. Castellito worries that Ryan will be damaged emotionally if he learns that his mother testified that she would have had an abortion if she had known about his condition. “Realistically how many children are going to hear that complicated story as opposed to the simpler message that ‘I didn't want you, you're disabled, I didn't want a disabled child,’” says Castellito.
This is an admittedly brief and inelegant attempt to discuss a very complex and highly emotional issue. I'm sure there are many other posts that might deal with it more thoroughly, which I'd love to you to forward to me if you find them! But I wanted to at least ask the questions.
I've been following the blog of a friend-of-a-friend who's son (one of twins) was born with serious health complications. And I've been deeply moved by the incredible care and concern he and his wife have lavished on their boy. It competes with the time they have for their new daughter, and seems to be exhausting. But they've named him in honor of strength, and faithfulness, and Christ himself. They post pictures of him next to his daddy's marathon medals, and cheer him on as he grows. What a beautiful, beautiful gift to begin this little life, and to proclaim its value.
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- maria
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4 comments:
You know, I often wonder about how I would react if something happened to either of my children. And although it was relieving to find out that my newest little one doesn't have any noticeable "abnormalities", you just never know. I think I would've wanted the doctor to tell me if they had noticed anything like spina bifida. I can understand the parents' frustration.
But based on this last pregnancy which was itself entirely unexpected and not good news for me, and resulted in 4 months of my being really out of it and miserable, I remember thinking about how upset I was that I was pregnant, and that if i were to lose this baby, I would be sad but would learn from this "mistake." If I had read someone else admitting that before I had had this experience, I wouldn't been pretty disgusted. I would've thought, "Thousands of woman are dying to get pregnant, and thousands of women suffer from miscarriages, you ungrateful woman! Be excited for your blessings! Children are blessings! Pregnancy is a miracle! What a terrible mother!" It is so hard when you are in the midst of the suffering. Some people handle everything that is thrown at them really well, chin-up, and face the challenge with sunshine on their side. I am not one of those people, apparently. I don't know how I will tell my child that I didn't really want him early on. I didn't want to journal about it because I didn't want him to read those words, but not journalling really ate me up. I think that, now that I feel more balanced and excited about my emerging son, I can imagine a conversation with him about my struggle when he is much older. But this experience has taught me much about judging women/ parents who find themselves in hard situations when dealing with their children. i hope the people in this article find the support that they need to handle their son's disability, and I hope that the son will have support in understanding his parent's reaction.
I don't know. It's so hard. Anyway, love you guys.
~michelle
Maria,
These are indeed very emotional and difficult issues for many of us. Perhaps that's because at some level we recognize what's at stake, viz. ultimate questions about the meaning and value of life. I can't say much about the court case because I do not know the details (Did the OB intentionally withhold information? Did he overlook something? What exactly are they claiming about his role? What exactly is a wrongful birth suit? etc.). But I do share the concerns that you have summarized with the brief statements from the Penn Prof., in terms of the potential message that the lawsuit might send to the child. The "wrongful birth" language does seem so heavily laden with questionable meanings that I wonder if it is wise or sensitive to use it. If there was a incidence of medical mal-practice here then it seems like their would be other ways to describe it or address it beyond (implicitly) putting the value of the child's life on trial. But I suppose my last statement has it's own unstated assumptions that would not be shared by many people. At any rate, I find it hard to think about these questions without recalling the room that we saw at Auscwhitz/Birkenau filled with the various prosthetic limbs of persons who went immediately upon arrival to the gas chambers. The intial phase of the Holocaust was apparently the "Euthanasia Program," where the Nazi's began putting to death people who were deemed "unworthy" of life due to some disability. I'm not suggesting some kind of "slippery-slope" here leading from wrongful death suits to genocide or systematic euthanasia; instead I'm merely reflecting on the sad reality that vulnerable people are almost always the first to suffer and the last to be truly understood, appreciated, and welcomed. If there were some way to determine whether or not a child would become an Einstein, Da Vinci, or Madame Curie, then there is little doubt that the child's entire life would become a matter of public spectacle and amazement, even as they foundered around on the floor babbling in dirty diapers (think about the story of Tiger Woods). It is easy to love and admire genius when we all benefit from it and depend upon it to improve and expand our lives. It is not so easy to love brokenness and "disability", or to see the ways in which the people who have them broaden and deepen our lives; and yet I think the contribution here is no less, maybe even more in certain respects. This is why I think that people are never more amazingly loving and inspiring then when they are living their lives day to day serving, LEARNING, and simply living with the most vulnerable people (this is certainly the well from which Henri Nouwen drew enormous draughts of inspiration and guidance for the rest of us). I remember John Smith once making the comment that to God even Einstein would appear to be like the smallest and most vulnerable infant, totally unable to understand or articulate anything...completely dependent and utterly defenseless....and yet God's greatest dream was to walk among us, to forebear our inestimable shortcomings and foibles, and to show us a new way of welcoming and loving each other without condition....
What a sad story :( I know from people I have met with special needs kids, they have no greater joy in their life. I think it is a scary thought that society would become a place where those with special needs never should have been born and we only have "perfect" children :( Reminds me of that movie Gattaca I think it was called.
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