Prenatal Testing, Disability, and Making Decisions: Two Stories
If you find out through prenatal testing that your fetus has a disability, deciding whether or not to terminate your pregnancy can be very difficult. The following sidebars profile two women who confronted this decision.
“The miracle you ask for may not be the miracle you receive.”
Tierney Temple Fairchild
I was having a wonderful pregnancy, filled with all the joy that expecting a firstborn can bring. Then the technician said during a routine ultrasound at 21 weeks that she was having difficulty seeing the heart and its chambers.
My husband Greg and I soon learned that the baby had only three heart chambers, and that this condition was highly correlated with Down syndrome. Our doctor encouraged us to have an amnio in order to have enough information to make a decision. We were immediately connected with a genetic counselor, who would be our lifeline for the next two weeks.
The days and weeks that followed tested our fortitude, challenged our faith, and required honesty and constant communication. We collected all the information we could about the heart defect, Down syndrome, and the two in combination. We talked frequently with our genetic counselor about the options, the statistics, and our emotions.
Three days in, the FISH [fluorescence in situ hybridization] test confirmed the diagnosis with 97 percent accuracy. It was another seven days before the amnio results created the certainty and urgency to decide. We saw every specialist we could and spoke with families about their experiences. At one point Greg even contacted an adoption agency specializing in Down syndrome. We tried to ask every question that could be answered.
The unanswerable questions nagged. What if the baby is among the 10 percent who are severely mentally disabled? How will the heart surgery at five months affect her development? Will we experience the social stigma we know exists?
We changed our minds a few times each, finally converging on a critical question: What is it about us with all our resources that make us unwilling to take on this challenge when many stand waiting to adopt? With no good answer, we overcame our fears and decided to continue the pregnancy. We mourned the baby we might have had and turned our attention to preparing for the special needs our child would bring with her.
Naia Grace Fairchild is now eight years old, fully included in her second-grade class, reading nearly on grade level. She is a happy, healthy child with two younger brothers and many friends. Greg and I often reflect on how big our concerns were during the decision. Our fears never materialized and we continue to watch Naia excel.
During our decision process and into her first year, there were many dark days. One sermon I heard during the process stuck with me. “The miracle you ask for may not be the miracle you receive.” Indeed.*
* For more information about Tierney Temple Fairchild’s experience, see Mitchell Zuckoff, Choosing Naia: A Family’s Journey (Boston: Beacon Press, 2003).
The five-month sonogram raised some concerns, so I was asked to go back for a follow-up. This time there appeared to be all sorts of small anomalies -- the fetus’s liver seemed too big, there seemed to be some spots on the baby’s brain, and the bowels did not look right.
“Part of what was so awful was the uncertainty.”
After several weeks, I was diagnosed as having CMV, or cytomegalovirus, infection. It’s a common virus that’s dangerous only if a woman gets it for the first time when she’s pregnant. I had apparently passed the virus along to the fetus. We were told that the baby I was carrying would almost certainly be deaf, would almost certainly be blind, and would probably have very severe mental retardation.
Deciding what to do was an awful process, and part of what was so awful was the uncertainty. We were told that these things were very, very likely -- though it was possible we would have a healthy baby. That was maddening. My husband and I, being who we are, dove into doing tons and tons of research, assuming that if we researched enough, we would get to really firm ground with it. But we never did. We just kept hearing the same thing: It’s very, very likely your baby will be born in this extremely impaired condition.
There wasn’t one moment when it became clear that we were going to terminate the pregnancy. It was just something that slowly, and very painfully, came to feel like the right thing to both of us. I had lots of fears of feeling endless sadness about the decision, but I didn’t feel it was unethical. I very much believe that these are decisions to be made by families, and that the fetus I was carrying was not yet a person with the same rights and privileges that I had or my husband had.
I was deeply upset by the loss of that baby and felt like the only way to get back on my feet was to get pregnant again. I got pregnant again about four months later and gave birth to my second daughter. Sometimes when I see my children, I have this vision of the boy we didn’t have being with them. He is really present in our lives in these unexpected ways, and I imagine he will stay there for a long time.
Photo © Thayer Allyson Gowdy
End of Excerpt.
Excerpted from Chapter 7: Prenatal Testing in Our Bodies, Ourselves: Pregnancy and Birth © 2008 Boston Women's Health Book Collective.
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