When Nicole and her wife were trying for baby #2, they had expected some fertility challenges. The couple was working with a fertility specialist and doing intrauterine insemination (IUI) each month. Nicole received daily injections to increase her egg production, along with hormones to promote ovulation. That and constant blood work and ultrasounds became the couple's routine for six months while also raising their daughter. At the age of 39, Nicole was delighted to have successfully conceived and began an array of prenatal testing -- some of which she had not done with her first child.
Chorionic villus sampling (CVS), a test that determines chromosomal or genetic disorders in fetuses, wasn't quite as available during her first pregnancy. The mother's quad screening, a maternal blood test, had yielded healthy results, prompting her to then consider a CVS along with nuchal scan ultrasound without much worry.
"Because I was almost 40, my insurance covered it," she remembers. "I figured 'why not?' I really went into it thinking, 'we will find out the gender early' -- no big deal."
Nicole was 11 weeks pregnant when she and her wife met with a genetic counselor, the same one from the first pregnancy. The familiarity gave way to laughing and joking as the group revisited the information about risks and how the testing functioned. It wasn't until Nicole was in the exam room and the ultrasound was being performed that she began to suspect something had gone awry.
"As the ultrasound tech was doing the nuchal scan, I could tell something was up. She got very quiet, and she had an intern with her and kept showing her the screen. I figured it was nothing, but I asked her what the measurement was of the nuchal fold. I knew that anything over 3mm was a red flag for Downs Syndrome. When I asked her, she sort of caught her breath and said, 'it is 2.6.' There was something about how she said it. She wouldn't look at me, and something just told me she wasn't telling me the truth or at least all of it. That is when I first thought something was wrong."
Nicole didn't get confirmation until about a week later during a prenatal appointment with her midwife. She had chosen to go alone while her wife stayed home with their daughter. The nurse informed her of what she had already intuited.
"I went in, and she just told me, 'I have the CVS results, and you have a boy who has Downs.' I was an absolute wreck. I cried and cried. The midwife just kept telling me it was just one of those things, that I didn't do anything wrong. It just happens."
Nicole's options were to continue with the pregnancy or to choose abortion. Her midwife encouraged her to seek further advice from the genetic counselor and speak to the fertility doctor before making any decisions.
"She really pushed doing the termination quickly, if we decided to go that route," Nicole recalls.
The mother immediately returned home, calling her genetic counselor and suggesting performing the test again. The counselor responded that they had run the sample twice and both times, the baby had tested positive. Nicole weighed redoing the CVS once more, but knew that an abortion would be "easier" at 12 weeks then waiting several more and then waiting on those results. She also adds that she simply knew that the results were accurate.
Among the many factors that the couple discussed, finances, their respective ages as "older parents," Nicole maintains that the impact on her daughter was a prominent component.
"We also thought about our age, and how this child would probably outlive us, and then what would happen," she says. "We thought about how her life would change with having a younger sibling with Down Syndrome. We knew that she would end up caring for her brother as adults since they both would most likely outlive us. And I didn't feel like it was fair to knowingly put that kind of responsibility on her." She adds that she didn't envision a "tiny baby" with Down Syndrome, but a teenager in school and then an adult.
She also realized that as a parent, she would need to prioritize her marriage -- one that she estimated could not be sustained with a special needs child.
"I know that it would have taken its toll on us as a couple," she confesses. "We don't have family nearby. I just knew all of our attention would be on the needs of the baby, and in the end, our relationship would suffer."
Nicole admits that she and her wife then made the decision to terminate quickly -- that afternoon.
The same terrain was explored by Robin and her husband when the couple learned that, at the age of 26, their soon-to-be first child had a rare heart defect. With no genetic disorders in the family, Robin chose not have the CVS. At a routine ultrasound at 18 weeks, the technician could not identify all four chambers of the heart. After a fetal echo cardiograph for two weeks later, Robin learned that her baby had Truncus Arteriosus, with ventricular septal defect.
"The pediatric cardiologist sat down with me and drew a diagram of what a normal fetal heart should look like and explained to me how it worked," she says. "Then he drew me a diagram of my daughter's heart and explained the differences. He explained that she would need several surgeries, at least three before the age of three, all of them major, and that there was a chance I wouldn't carry her to term."
Robin remembers being given "the facts" about her daughter's condition along with her options without any "sway" from her doctors regarding her decision. Like Nicole, Robin carefully considered if her marriage could withstand the demands of a special needs child, ultimately concluding that it could not.
"The biggest thing was the quality of life for the child we were bringing into the world," she adds. She described her family as "heartbroken," as the baby was the first grandchild for her parents and the second for her husband's. Yet she felt 100% supported in her decision, eventually delivering the baby pre-term with her mother by her side.
Robin is "very open" about her choice with friends, but admits that she has lost some because of her decision and has "been called some very hurtful things."
"It wasn't by any means an easy decision but we did make the right one for our family," she discerns.
Nicole tells Mommyish that she and her wife still think of the baby -- whom they named Thomas -- "all the time." Guilt for their decision pervades, despite that the couple has no regrets.
"I think about how old he would be now, what it would be like to have a boy. I remember the sadness of letting go of that baby. I look back on the whole thing as a pivotal moment in my life. It was a horrible thing to have to do, but I am so glad that we were able to make the choice."
(photo: Lilyana Vynogradova/ Shutterstock)