When genetic conditions such as Trisomy 21 (Down syndrome) and Trisomy 18 are diagnosed prenatally, parents may face a very difficult dilemma. They must either prepare themselves to provide an extraordinary level of care for their child — perhaps for the rest of their lives — or choose to abort. In many cases, parents sadly choose abortion.
According to a report from 2017, among women who chose to have prenatal screening and who then received a diagnosis of Down syndrome, the abortion rate was 67 percent in the U.S. (1995-2011); 77 percent in France (2015); 98 percent in Denmark (2015); and close to 100 percent in Iceland. The article quotes an Icelandic geneticist who said, “My understanding is that we have basically eradicated, almost, Down syndrome from our society — that there is hardly ever a child with Down syndrome in Iceland anymore.”
In the fall of 2020, I had an article published in The Federalist that expressed my admiration for Justice Amy Coney Barrett’s pro-life stance, especially in view of her having a child who has Down syndrome. Since the vast majority of babies diagnosed prenatally with Down syndrome are aborted, I admired her integrity in keeping her child. My own brother has Down syndrome, so I know firsthand how challenging and rewarding it can be to provide care for someone with disabilities.
Of course, being the sibling of someone with disabilities is different from being the parent of a child with disabilities, as I found out in the spring of 2022, when our baby was diagnosed prenatally as having Trisomy 18. The initial diagnosis from an ultrasound was confirmed by non-invasive prenatal testing. It was hard to hear that our child would be severely disabled if she were to live. It was even harder to hear she would likely die before birth, or soon thereafter. My wife had already had two miscarriages in the previous two years. It was painful to realize that, although our little daughter was doing well in utero, she probably would not live very long.
In our initial genetic counseling, we were informed abortion was an option. Though we didn’t have statistics, we knew intuitively that most people in our situation would choose abortion. But because of our Christian faith, we didn’t consider it. Most of our doctors respected our decision, even if they disagreed with it personally. There was one notable exception, however.
Around 25 weeks, we went to see the OB-GYN. On that particular visit, we saw a doctor whom we had not met before. This was shortly after the Supreme Court overturned Roe v. Wade. We noticed immediately that this doctor, unlike the other doctors in the same practice, did not ask us for our baby’s name or sex. In fact, she never referred to our baby at all. She merely told us, “The heartbeat might stop.”
She proceeded to inform us we were “lucky” to live in a state where there was a hospital that would perform an abortion at this stage of pregnancy. We were too shocked to respond. The doctor finished up quickly and hurried out of the room. Afterward, Hannah Arendt’s phrase “the banality of evil” came to mind as I reflected on the doctor’s indifference toward our child and our beliefs.
A few months later, our daughter, Caroline Elizabeth, was born on Thanksgiving Day. She passed away after living only a little more than 30 minutes outside the womb.
An article from 2019 describes the experiences of two other women whose babies were diagnosed prenatally with Trisomy 18. One woman, a medical student at Harvard, planned an abortion after receiving the diagnosis, but her child passed away naturally in utero. The article compares her experience (“I wanted to make the point that ending a pregnancy under these circumstances can be a loving, compassionate and medically reasonable choice”) with the experience of a woman from Missouri, who had to “go to a clinic with screaming protesters outside.”
In reflecting on the Missouri woman’s experience, the Harvard medical student said, “[The protesters] were saying [to the woman from Missouri], ‘That’s daddy’s little girl you’re killing,’ and to be going through this experience and to have people shouting this to [her], speaks to the fact that people don’t totally understand all the reasons that people pursue abortion. And I think as a community we have a responsibility to make sure that the most vulnerable are protected. And I think that for a lot of people, they would argue that the fetus is the most vulnerable here. But I think that we should place more trust in parents to choose what is best for their families and support them in that.”
It is true, as she says, that people “don’t totally understand all the reasons that people pursue abortion.” But it is also equally true that people don’t totally understand all the reasons people oppose abortion. Indeed, there are many different angles from which to criticize abortion: that it’s a sin in the sight of God; that it’s a cruel and violent way to die; that personhood begins at conception, and therefore abortion kills a person; that prenatal screening puts us on a slippery slope toward eugenics; that killing a person isn’t therapeutic. These things are all true, in my view. But I have come to believe there is another reason abortion is wrong: It denies a child the right to trust her mother.
While watching my wife hold our daughter and stroke her face as she struggled to breathe, it occurred to me that our daughter had every right to feel completely safe in her mother’s arms. Our daughter’s ability to trust her mother was a natural right, one that is fundamental and irrevocable. And this matrix of trust extended to me as well. In order for my child to be able to trust my wife fully, my wife had to be able to trust me fully. My wife had the right to make claims on my effort, attention, and resources as she provided for our child. She had to be able to trust me to act in her best interest so she could act in our child’s best interest. And we both had to be prepared to sacrifice ourselves each day in order to care for our child, even if it were for the rest of our lives because our daughter had the right to trust her mother and father to provide for her.
It seems bizarre to me that the natural right of a child to trust her mother is denied by so many people. Indeed, we live in a society where most people would say aborting a child with Trisomy 18 is understandable, or even “loving, compassionate and medically reasonable,” as the Harvard medical student said. But I am thankful my wife chose to respect our daughter’s right to trust her mother. As a reward, my wife was able to experience the loving trust of our daughter, face to face, for half an hour on Thanksgiving Day.
