Should We Treat Cognitive Symptoms of Down Syndrome?

Opinion   |   Rebecca Taylor   |   Jan 10, 2012   |   11:15AM   |   Washington, DC

This last year has shown hope for a cognitive treatment for Down Syndrome. And yet there has been some reservations about such treatment by parents of children with Down Syndrome. They worry that treating their child for cognitive dysfunction implies that there is something wrong with having Down Syndrome. That somehow their beautiful, loving, happy child is not good enough and needs fixing.

In her article for LifeNews, Effie Caldarola, a mother of a child with Down Syndrome, asks:

Is this good? The idea raises questions on so many levels. Who would hesitate to immunize their child against disease, buy them the eyeglasses they need, or let’s face it, indulge the American desire for every child to have the perfectly aligned set of teeth? But to alter someone’s intelligence level with a drug? Does this suggest that there is something wrong, something diseased or misaligned, about the I.Q. with which we are born?

What next? Can we soon alter all of our children’s I.Q.s? Should we? And specifically, what about those kids with Down’s? If you continue to have all the other attributes of the syndrome, the possible heart problems or speech impairments, the physical distinctions, how does all of that fit in with an I.Q. level that’s in the “normal” range — whatever “normal” means?

I am not a parent of a special needs child so it is incredibly difficult for me to comment on these very valid concerns. Making genetics my profession, I have always thought a person is more than just a sum of their genes. So for me a person with Down Syndrome is so much more than their extra chromosome 21. The syndrome is not who they are. It does not define them. And so therefore I have never personally perceived treating the cognitive issues associated with Downs as a rejection of their person. I also do not believe that a person with Down Syndrome needs to be “fixed.” But I could certainly see how such measures could be perceived as such.

Dr. Gerard Nadal has written a fantastic response to the ethical issues surrounding the treatment of Down Syndrome. I thank him for writing it. A father of a special needs child Joseph, Dr. Nadal adroitly handles this very sensitive issue by explaining that treatment that allows children to be the best they can be is not a rejection of who they are:

Do we want Joseph to only become “functional enough” and then leave him looking sufficiently autistic? No, of course not. We want him to be all that he is capable of becoming, given the brain with which God has blessed him. He will never not have autism. He will forever retain certain of the traits that define autism. However, we want him to have as many options in life as possible.

This isn’t because we reject his autism. It’s because his autism ought not limit his options if there is anything we can do about it.

Joseph’s great dignity does not come from having autism. It comes from being a child of a loving God, entrusted to a mother and father who love him simply as their son. It matters not how he is neurologically configured. We don’t love him any more or less than we love his sisters. We love him simply because he is our son, and that love compels us to seek the very best for him in life.

Parents of those with Down Syndrome are no different. However, some have come to define their child by the child’s developmental and neurological configuration, and not by the more metaphysical realities. Like Joseph, high academic achievement in the child with Down Syndrome will never ameliorate their underlying physical reality. Note: Rebecca Taylor is a clinical laboratory specialist in molecular biology, and a practicing pro-life Catholic who writes at the bioethics blog Mary Meets Dolly. She has been writing and speaking about Catholicism and biotechnology for five years and has been interviewed on EWTN radio on topics from stem cell research and cloning to voting pro-life. Taylor has a B.S. in Biochemistry from University of San Francisco with a national certification in clinical Molecular Biology MB (ASCP).