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Prenatal Testing, Disabilities, and A Cause for Hope

It was a hot day in July when I was finally over the worst of my “morning” (i.e., all the time) sickness, and I took myself down to my local thrift store. Besides getting some cute maternity clothes (pro-tip: 2nd hand maternity clothes are the best because they have already been stretched out!), I saw a book called The Girlfriend’s Guide to Pregnancy. I thought it could be pretty helpful, so I picked it up and started reading.

The Girlfriend’s Guide to Pregnancy is filled with some great, humorous explanations and advice on pregnancy. But, one thing that did really disturb me was the advice the book gave on prenatal testing. Don’t get me wrong, I am a big fan of prenatal testing. It can help families plan for their life with their new little one. I got all the prenatal tests my insurance would cover, as well as an extra ultrasound and genetic counseling. We wanted to be prepared for whatever lay ahead with our baby. Fortunately, we had good doctors and counselors who also understood the importance of early intervention and never treated any disability like it would be the end of the world. The Girlfriend’s Guide to Pregnancy, however, gave a very bleak view of disabilities, especially Down Syndrome. The book acted as if a Down Syndrome diagnosis was a tragedy without compare. This sent me down the rabbit hole of pregnancy and eugenics.

The next pregnancy book I picked up, The Positive Birth Book by Milli Hill, gave a much brighter view of Down Syndrome. It included a little vignette about a mother who wouldn’t trade her daughter with Down Syndrome for anything in the world. However, the book did end the chapter by saying the “choice” of whether to carry the pregnancy to term is entirely up to the mother. Hill, who lives in the UK, also pointed out how grateful British women should be that their country doesn’t recognize the rights of the unborn, so the mother is treated as the only patient. Despite thoroughly enjoying most of Hill’s book, this statement really rubbed me the wrong way, as I desperately want my child to be treated as an equal patient, especially if he had a life-altering disability.

In 2019, Mary O’Callaghan wrote a great article for the University of Notre Dame’s McGrath Institute for Church Life on prenatal testing and how it affects those with disabilities. O’Callaghan points out that great strides have been made in the treatment of those with disabilities. We have gone from the mid-20th century where many people were institutionalized to now where people with disabilities have become actors and models, including a Gerber baby with Down Syndrome in 2018. Despite these strides, Americans still abort 70-90% (statistics are not well kept) of those with Down Syndrome. This totals to about 3,000 Down Syndrome babies each year. There is even less information about other disabilities, but the numbers are thought to be similar. According to O’Callaghan’s article the Guttmacher Institute, the research arm of Planned Parenthood, states that there are at least 27,000 abortions in the United States each year where the mother listed a health problem or disability as the main reason for the abortions. The statistics are even worse in some European countries and others with more lax abortion laws where 90% or more of children with Down Syndrome are aborted. In fact, Denmark and Iceland have almost 0 children born alive with Down Syndrome.

O’Callaghan then makes an excellent point, saying that we went from denying a normal life to people with disabilities to now denying many of them a life at all. Discrimination against those with disabilities hides behind abortion. How do we reconcile disability rights after birth while denying rights before birth? Even Roe v. Wade and Planned Parenthood v. Casey did not intend to select which children should and should not be aborted. At first, disability rights and abortion didn’t seem to have a connection, and by the time the connection was brought up many of those in the disability rights community were already committed to the pro-choice cause. This has caused a rift in the disability community. The Down Syndrome Society refuses to take a position on abortion. ARC is vocally pro-choice, saying that their clients suffer, so others who would suffer should be terminated.

When prenatal testing was new, much of the testing was oriented toward the health of the child. Three of the pioneers for major diagnostic tools were staunch advocates for the unborn. Dr. Ian Donald was a Scottish obstetrician who developed the fetal ultrasound machine so he could provide better assessment of and care for his unborn patients. Dr. Jerome Lejune discovered the chromosomal basis for Down Syndrome, believing that early intervention was best for children with Down Syndrome, even intervention in the womb. When he realized his work would be used for selective abortions, he spent the rest of his life advocating against the practice. Dr. Alfred William Liley perfected amniocentesis for both the diagnosis and treatment of RH incompatibility. He later founded the Society for the Protection of Unborn Children in New Zealand in 1970.

O’Callaghan points out, however, that there is hope that prenatal testing can be used for good. In 2011, clinical trials were begun to explore the efficacy of treatment of some cognitive deficits of Downs Syndrome. Dr. Diana Bianchi, now affiliated with the NIH, extended this research to examine the possibilities of this treatment in utero, noting such practices as a viable alternative option to abortion. Bianchi’s lab has been experimenting with pharmacological therapies to relieve oxidative stress seen in the brains of people with Down Syndrome as early as the second trimester. Hopefully this can lead to the unborn with Down Syndrome being treated with the same dignity as any other patient.

O’Callaghan stresses that we need to understand what prenatal testing can and cannot do. It can gather information for the care and treatment of the unborn. It cannot assess how happy a person will be or how much they will suffer in life. Most importantly, it cannot assess whether someone is better off living or dead. In fact, 90% of individuals with Down Syndrome, as well as their parents and families, are happy with their lives. Even when children have the most serious life-limiting disabilities, parents who choose perinatal hospice report that their child's short life was a gift. Research has shown that these parents come out of their experience with greater psychological health than those who terminated their pregnancies.

We decided to go ahead and get all the prenatal tests that my insurance would cover. Being pro-life, we knew that if our child ended up testing positive for Down Syndrome or some other condition, we would want to provide as many early interventions as possible, and plan for every consideration after birth. If the worst happened, and our child was not going to survive long after birth, we knew we would want to plan to spend as much time with him as we could, and make our time as meaningful as possible. We would want to do everything we could to make sure our child felt as little pain and as much love as possible.

All of our prenatal tests turned out to be “normal” and we are anxiously awaiting the birth of our Nathaniel John. Although prenatal testing did not find anything out of the ordinary, as I pointed out in a previous blog post, I would be kidding myself if I thought our baby would be 100% “normal.” Even though my son might not have a condition as obvious as Down Syndrome, I will be surprised if he doesn’t have some sort of learning difference, as both my husband and I needed extra accommodations in school. But it’s the differences and challenges that made my husband and me who we are today, and it will be the same for my son. Nathaniel’s struggles and quirks will make him him. Things that others see as disadvantages might allow him to see the world in a new and unique way. I never wanted a perfect child, whatever “perfect” means, anyway. I just want my child, and for him to be the best version of himself.


Disclaimer: The views presented in the Rehumanize Blog do not necessarily represent the views of all members, contributors, or donors. We exist to present a forum for discussion within the Consistent Life Ethic, to promote discourse and present an opportunity for peer review and dialogue.

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