Every prenatal test, every ultrasound, is a question of faith, trust and values. Nothing is "simple", nothing is "basic". There is no "just to see the sex" or "just to have another picture" and then-be-done-ultrasound.
Prenatal testing is highly political and leans towards covering a provider's ass in litigation. What we are assuming is that there is something we can do with our "less than perfect" baby before the birth. We assume that either we'll abort or we'll be "prepared". What happens - really?
A withdrawal of excitement about the pregnancy, to be sure. A distancing of emotion from the baby. Telling people changes.... "we're pregnant, but our baby....." It's different.
What is most frustrating about this entire situation is the lack of accuracy. So, we put women and families through grief, guilt and anxiety for NOTHING. All for just "needing to know".
Barbara Katz Rothman has an excellent book, The Tentative Pregnancy. I read it in school and while it has more to do with amniocentesis, the emotions that surround prenatal testing are always right on.
From Pamela Vireday's website:
However, a problem diagnosed prenatally may sometimes worsen outcome instead of improving it. The provider's perception of the pregnancy and the baby changes, and some research (see www.aims.org.uk/ultrasound.htm) shows that babies diagnosed prenatally were delivered earlier and by more cesareans than babies with the same condition not diagnosed prenatally. This did not improve outcome, and may have worsened it. So prenatal diagnosis may be a mixed blessing in some cases.
Sometimes there are also "ambiguous" diagnoses, ones where the radiologists think there might be a problem but can't say for sure, even with further ultrasounds. These parents are really left in limbo, not knowing what the status of the child is. With no clear answers, nothing can be done, and parents are left with a ton of anxiety but nothing to do about it.
Most of the time when there is a problem diagnosed prenatally, there is nothing that can be done differently to improve a baby's prognosis. You find out there's a problem but that there's little that can be done. What then? This is one of the difficult dilemmas presented by prenatal diagnoses.
Some parents prefer to know about any problems ahead of time so that they could grieve these problems sooner rather than later and be more prepared for the baby's situation at birth. Some research supports the idea that knowing ahead of time can help parents adjust better and be more prepared; some does not.
On the other hand, some parents do not feel that knowing ahead of time was a gift at all. Barbara Katz Rothman discusses this issue at length in her excellent book, The Tentative Pregnancy. She talked to many parents who felt like their experiences of pregnancy and birth were tainted by foreknowledge of the baby's problems, and that knowing of even very minor problems took much of the joy and anticipation out of their pregnancies. The New York Times article mentioned above (the "false positive" for club foot) also found this to be true.
There is no easy or automatic answer here. When deciding whether to have an ultrasound to detect fetal abnormalities, think over all these issues beforehand. Would it be a blessing to know of any problems ahead of time? What would you do with the knowledge? What are your beliefs about abortion? Do you think it would change your experience of pregnancy to know about any problems ahead of time? How would you handle news of a problem?
It is in the potential detection of fetal abnormalities that ultrasounds, AFP tests, and amnios present the most difficult dilemmas. No one answer is "right" for every person or situation, and the choices are some of the hardest a person can ever face. That's why it is very important for couples to discuss the implications of prenatal testing before the process begins, and to understand the implications of their choices.
What do we take away from women - in terms of empowerment, trust and bonding with their baby - in exchange for these ambiguous tests?
4 comments:
In what situations would it be helpful to know about a problem beforehand, in terms of medical care? Surely there are some?
That's a great book. Have you read "In Labor: Politics and Power in the Birthplace"? It was one of the first birth/politics type things I ever read back in college, and really started me on my lifetime path I feel. I met her in person once, and she was fascinating as a lecturer, too.
jen
This is a great issue and a thoughtful post. I am about to turn 36 and have been thinking about that line I'm crossing where doctors would now recommend an amniocentesis if I were pregnant (which I'm not and do not plan to be).
I don't think I would get it. But as someone whose first pregnancy ended in termination after we discovered pronounced hydrocephalus in our son at 18 weeks' gestation, I would still get an ultrasound.
I definitely experienced the "tentative preganancy" with my two subsequent sons. It was not until I'd gotten a clean ultrasound that I was able to begin feeling excited about the pregnancy.
I feel that the joy of pregnancy was stolen from me with the outcome of the first pregnancy. However, I consider it a fair trade for having the advance prognosis on our son. What truly was stolen was our first child, whose brain was not going to develop.
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