The value of prenatal testing.
When I finally became pregnant after six years of infertility, I worried that I would miscarry, but I never really worried that my child might have a problem. I had an alpha-fetoprotein (AFP) test because I had taken a fertility drug and was curious to know if I was carrying twins. When the results came back elevated, I still wasn't concerned. I figured it was either twins or an error.
There was never any doubt in my mind that I wanted my baby. So when my daughter was diagnosed with spina bifida during the follow-up ultrasound, in the nineteenth week of my pregnancy, I made it very clear I had no intention of terminating.
Over the next few weeks, I was repeatedly asked to explain my strong desire to have this child. The infertility specialist told me I should be able to conceive again, if that was my concern. But that wasn't it. What it really came down to was this--we did not conceive our child to play football with her. We didn't keep her because we were afraid we would "burn in hell" if we aborted. We kept her because we loved her, we wanted her, and there wasn't anything that we wanted to do with a child that she would not be able to do.
The counselor's role
I fully believe that genetic counselors should remain neutral on the issue of abortion. They should offer families a clear picture of the implications of their findings, and then allow them to make their own decisions. However, I do not believe that rattling off a list of intimidating medical conditions constitutes offering a clear picture.
I also believe that it is inappropriate for a genetic counselor to speculate--even when asked--about what he or she would do in a given situation. First of all, it is a question that is impossible to answer. By 24 weeks gestation, a pregnant woman has already developed a relationship with her baby. She is showing; everyone knows she is pregnant. She has felt the baby move. The counselor may feel able to weight the decision objectively. However, in the same situation, she might find herself considerably less objective.
Mostly, however, I feel that a woman needs to make this decision within the context of her own value system. In her darkest hour, whatever she decides, she needs to know it was her own decision. This is a mighty burden to bear. A counselor may be tempted to try to help her shoulder it, but that is not part of the counselor's role. The counselor's responsibility is to give the woman as much information as possible to help her make this decision on her own. If a woman truly seems unable to decide, I believe it would be more appropriate to bring in an additional advisor--a social worker perhaps--rather than violate the neutrality of the genetic counselor.
As prenatal testing becomes increasingly routine, genetic counselors will find themselves serving more and more women who are either ambivalent about, or opposed to abortion. These women deserve an approach that is respectful of their values. Their babies deserve the benefits of early diagnosis, but they will not have that benefit as long as women are distrustful of genetic counseling. One of the most common questions I am asked about my experience is, "Did they try to get you to have an abortion?"
Fortunately, I am able to answer emphatically, "No, they did not. They were very supportive of my decision." But the very frequency of the question underscores the distrust that exists.
An "informed decision"
Though I was never pressured to terminate my pregnancy, I was asked repeatedly whether or not anyone had discussed my options with me. Until I reached the third trimester of my pregnancy, every new practitioner I met--and there were quite a few--seemed to feel it was his or her personal responsibility to establish that I was making an "informed decision."
I would like to suggest a simple solution to this potentially upsetting problem. I believe there should be one member of the team--whether it be the genetic counselor or the social worker--who is designated to verify that the patient has reached an informed decision. Once a decision has been made, a bright red sticker should be placed in a prominent position on the patient's file, indicating to all other practitioners that they do not need to bring up the subject. If doctors fail to see a sticker on a woman's folder, they can simply inquire as to whether she has had the opportunity to talk with the counselor, or social worker, or whomever the designated person may be.
When a woman is undecided, she is sometimes offered the opportunity to meet with the family of an affected child. I have already stated that I am opposed to abortion, so you may be surprised to hear that I feel such a meeting to be totally inappropriate. If a family has decided to keep their baby, I would be more than happy to meet with them, but I could not possibly meet with them before that time.
First of all, there is absolutely no way I could be neutral. My daughter is my pride and joy. Beyond that, no two children with spina bifida, or any other disability, are alike. My daughter's condition may be very different from that of their child. Also, I would feel as if I was giving this family the opportunity to judge the value of my daughter's life in order to decide whether they should give their own child life. As my daughter got older, I would worry that she might pick up on that aspect of these meetings.
Still, the opportunity to see living, breathing children--rather than hearing a list of medical conditions, could be very helpful to families in the decision-making process. The ideal solution may be for a neutral party to make a videotape of a number of children with a given disability. The video could cover the range of possible disabilities, and to paint a balanced picture of everyday life, the children could be shown in the community and at home. The distance afforded by a videotape would also protect the family making this difficult decision. They would not be under any pressure to make a decision to please anyone but themselves.
Yet, if I were to meet with a family struggling with this decision, there is one thing I would want to say: All new parents look at their tiny babies and wonder if they will be able to rise to the task of caring for them. Parents of children with disabilities are no different. Who can blame them if they question their ability to cope with their children's problems? Yet just as millions of new parents cope with their responsibilities every year, thousands of ordinary couples also rise to the challenge of caring for children with disabilities.
It's better to know
At the time of Heidi's diagnosis, I was working in a large office full of women. Many of my coworkers told me how brave they thought I was. No one came right out and said they would have aborted, but I know a lot of them thought it.
It's such a contrast with what we hear now. When people see our bright, happy little girl and find out that we knew about her condition before she was born, they say things like, "What a tragedy it would have been for you to have aborted this beautiful child!"
And Heidi is beautiful. She has a gift for happiness. When we go to the mall, people see her tooling around in her little purple wheelchair, and they smile at her because she's so cute. Then, I frequently see a cloud come over their faces as they realize something must be wrong with her. But the cloud soon gives way to another smile as they realize it doesn't matter, because this child is obviously happy just the way she is.
I do sympathize with women who say that they would never want to be faced with such a decision. I hear women say that knowing ahead of time would ruin the remainder of the pregnancy.
I will admit that my pregnancy was a very difficult time, but I will always be grateful that when I finally gave birth to my daughter, it was in a setting where she could get the best of care from the moment of her first breath, and that my husband and I were fully prepared to welcome her into our lives with open arms. At the time of a prenatal diagnosis, it may be hard for families to see the value of the opportunity they have been given, but ultimately I believe families and their children benefit most by knowing about problems as early as possible.
|Printer friendly Cite/link Email Feedback|
|Title Annotation:||Point of View|
|Publication:||The Exceptional Parent|
|Date:||Aug 1, 1995|
|Previous Article:||Genetic counseling: the science is the easy part.|
|Next Article:||A new twist to "playing doctor".|