By Louise Kinross
It makes me sad to think that the lives of children like my son are being targeted for termination. Is this a step forward? Something that will make the world a better place?
We can identify more and more genetic disorders, but can we use this information in an enlightened way to help families make decisions about raising or terminating children with disabilities?
When I couldn't make a decision, an obstetrician was sent in to berate me, referring to a child with Down syndrome as "a burden you'll live with for the rest of your life."
What kind of counselling is offered today to the parents of a fetus that is diagnosed with a micro-deletion or micro-duplication? Even less is known about some of these conditions because they're just being named.
Is a medical description of the condition paired with information from families raising children with the same disorder? Or affected adults?
In my son's condition, there's huge variation in how children are affected and microarray can't predict whether the symptoms will be mild or severe. And what about the human side of the equation, the joy that a child, regardless of ability, brings to a family. That can't be conveyed by a professional who has no firsthand experience with disability, and may well view disability as a medical failure.
"Women often terminate a pregnancy without knowing what life would be like with and for an anomalous child," writes Far From The Tree author Andrew Solomon in this New Yorker piece. "It is worth publicizing the satisfaction that the experience may entail, so that the pro-choice movement becomes the pro-informed-choice movement."
Parents-to-be often "confuse how it feels to lose an ability (to be suddenly bereft of hearing) with how it feels to live healthily with a variant body (to be deaf all your life)," he writes. "Further, they confuse their own discomfort with their child’s."
This is a point true of amniocentesis, but when I was counselled, no one ever explained it to me. My understanding was that a clear amnio result meant a genetically-intact child. After my son was born, I stopped counting the doctors who exclaimed, in disbelief: "But you had a normal amniocentesis!"
Further, the ACOG notes that "diseases may be identified for which the clinical presentation may vary greatly and range from mild to severe. It may not be possible to predict what the outcome will be in a given patient."
Oddly, the paper doesn't mention anything about termination.
How come there is no research on the "after" side of the prenatal-testing equation?
For example, how do parents rate the counselling they received? How could it be improved? Did parents feel equally supported by professionals in choosing to carry a child to term or terminate the child? What supports are provided to parents who terminate and what supports are provided to parents who don't?
I believe the front-end of prenatal testing is proceeding at a pace way beyond our ability to understand its ramifications.
It's how we support families after the diagnosis that needs study.
Science must be used to our benefit, not just because the knowledge and technology exist.