Samuel's Choice: A Father Who Chose to Keep His Baby with Down Syndrome

Raza Forrest, the mother in Armenia who rejected her baby boy because he has Down syndrome is making headlines. She was advised not to look at Leo and immediately consigned him to an institution, handing her husband Samuel an ultimatum; ‘either surrender the baby to an institution or I will divorce you.’

Samuel bravely chose to raise his son, is leaving his wife and returning to his native New Zealand. He set up a GoFundMe account to raise $60,000 to live on while nurturing his son for his first year of life. The amount raised is staggering: It grew from $345K to $438K this evening alone.

Something in this story is certainly resonating with the public. But in reality this story is hardly news; it happens to thousands of couples every day around the world.

Let’s look at the cultural context. Armenia is a nation which rewards conformity; it is not a melting pot. When doctors deliver babies with disabilities, it is common practice to prevent mothers from seeing them and encourage them to consign them to orphanages. Through the international adoption agencies like Reece’s Rainbow, the horrific conditions of such institutions have been revealed. I suspect that this was in part responsible for the tremendous reaction to the story.

The thought of this adorable baby boy lying alone in a crib for years without arms to hold him, is heartbreaking. Yet in the US, until the 1970’s when we were alerted to the horrific conditions of institutions like Willowbrook, the institutionalization of people with Down syndrome was common practice. Doctors assured parents that it was for the best interest of their child and the rest of the family, and even issued death certificates so the family could move on with their lives and forget the baby. A version of this heartbreaking situation is depicted in the film “The Memory Keeper’s Daughter.”

Nowadays the scenario in the US is different. Expectant mothers are offered NIPS Non-invasive Prenatal Testing, a simple blood test given early in pregnancy where the manufacturer promises a 99% accurate estimate of the likelihood that their children have Down syndrome. Recent studies have shown that accuracy to be far lower than claimed, but the expectation is that a mother will screen, confirm with an invasive test, and then abort her baby if the doctor delivers a prenatal diagnosis of Down syndrome. Where does this expectation originate? You can’t blame the mothers alone; in a recent survey, 25% of mothers whose babies were prenatally diagnosed with Down syndrome said their physicians were “insistent” that they abort their babies.

Some nations subsidize such testing perhaps with the intention voiced by former US Surgeon General Joycelyn Elders who touted the eugenic benefits of abortion/in her testimony before Congress in 1990.

"Abortion," she said, "has had an important, and positive, public-health effect," in that it has reduced the number of children afflicted with severe defects." As evidence, the future surgeon general cited this statistic: "The number of Down's Syndrome infants in Washington state in 1976 was 64 percent lower than it would have been without legal abortion."

So there are millions of mothers who, like Raza Forrest, who have not seen their babies with Down syndrome, had not had a chance to bond with them, and yet make a decision to separate from them forever. At least baby Leo would have lived in hopes of adoption. In nations where prenatal testing is widespread, the abortion rate can be as high as 93% for babies like Leo.

So before we judge Leo’s mother too harshly, we must consider whether our practice of abortion for babies with Down syndrome is more humane than institutionalization. This is particularly upsetting in wealthy countries like the US where medical, educational and societal advances have made this one of the best times in history to live a happy life if you happen to have an extra chromosome.