I’ve spent a good bit of time over the past few months contemplating the utility of prenatal testing. I’ve written on Healthland here and here about how new prenatal tests could slash the number of babies born with Down syndrome, and in the Feb. 27 issue of TIME Magazine, I expanded on the story. That piece generated more letters to the editor than any other article in the issue; readers clearly care — a lot — about how much we should know about babies’ genetic profiles before they’re born.
So I took particular interest in Emily Rapp’s brave and agonizing essay published Monday on Slate in which she says she would have aborted her son, Ronan. Almost 2, Ronan has Tay-Sachs disease, a progressive genetic disorder that his mother believes will kill him sometime this year. It has already robbed him of his sight and left him paralyzed.
In a failure of modern medicine, Ronan’s condition was not detected prenatally; his mutation was too rare. But had Rapp known ahead of time that she would give birth to a beautiful, bright-eyed boy who would suffer daily seizures and be unable to move or swallow, she says she would have chosen to spare him — and her — the incredible pain. She would have ended her pregnancy “without question and without regret, although this would have been a different kind of loss to mourn and would by no means have been a cavalier or uncomplicated, heartless decision.”
In October, I wrote about another wrenching essay of Rapp’s that noted a silver lining in her sorrow: she and her husband are free to love Ronan without the constraints of tomorrow, she said. There are no enrichment classes, no worries about their child’s behavior or temperament, no drilling him in the finer points of please and thank you. And yet, the silver lining in no way compensates for the horror of watching your child deteriorate before your eyes.
In her Slate essay, Rapp takes on Rick Santorum, who has been vocal about his opposition to prenatal testing as he seeks the Republican presidential nomination. Santorum also knows a thing or two about a disabled child; his daughter, Bella, 3, has trisomy 18, a disorder that kills 90% of affected babies before their first birthday. Rapp writes:
I’m so grateful that Ronan is my child. I also wish he’d never been born; no person should suffer in this way—daily seizures, blindness, lack of movement, inability to swallow, a devastated brain—with no hope for a cure. Both of these statements are categorically true; neither one is mutually exclusive.
That it is possible to hold this paradox as part of my daily reality points to the reductive and narrow-minded nature of Rick Santorum’s assertions that prenatal testing increases the number of abortions (a this equals that equation), and for this reason, the moral viability or inherent value of these tests should be questioned. Prenatal testing provides information, a value-less act. I maintain that it is a woman’s right to choose what to do with the information that attaches value and meaning, and that this choice is — and must be — directly related to that individual’s experiences. What’s at stake here is not the issue of testing, but the issue of choice. I love Ronan, and I believe it would have been an act of love to abort him, knowing that his life would be primarily one of intense suffering, knowing that his neurologically devastated brain made true quality of life — relationships, thoughts, pleasant physical experiences — impossible.
For sure, there is a huge difference between aborting a child who has no chance of survival and a dreadful quality of life in his shortened months on earth and a child with Down syndrome, who — depending on his abilities — can learn to read, to ride a bike, to live alone. Children with Down syndrome born today live, on average, until the age of 60; children with Tay-Sachs don’t reach kindergarten. Even if they lived that long, they are fundamentally brain-damaged, incapable of practicing their ABCs or coloring in the lines.
Is ending one type of pregnancy wrong and another right? It would seem an entirely personal, tortuous choice, and yet the debate continues.