I’ve written a lot about the problems I find with the
prenatal testing industry in general, and prenatal screening for Down syndrome
in particular. Much as I hope things will change, I do not hold doctors solely responsible
for the high rates of abortion (estimated at 85-90%) for women whose babies
have a prenatal diagnosis of Down syndrome. Doctors participate in a larger
cultural problem. Most of them think their misguided advice comes, in their
mind, as an act of care and compassion.

Most of what I’m about to write is anecdotal. It comes from
conversations with friends who are doctors, with medical students who have
visited our home, and from a conversation with a developmental pediatrician who
works exclusively with individuals with Down syndrome.

From what my friends tell me, most doctors have a clinical
understanding of Trisomy 21. They know the biology of it–the various ways an
extra 21^st chromosome makes its way into the development of a child;
the list of physical, mental, and medical complications an extra chromosome can
create. Most doctors (like most people in the general population) do not have a
social understanding of Down
syndrome. They haven’t spent time with people with Down syndrome. They haven’t
had dinner or gone for walks or experienced life through the eyes of someone
with a disability. One pediatrician friend told me, for instance, that he knows
he should prescribe Physical Therapy for a patient with Downs. He has no idea
what happens in a PT appointment. He has no idea how much time that takes and
whether it causes stress or eases the burden of a family. It’s just the thing
to do when a patient has low muscle tone.

My pediatrician friends also explained that when it comes to
relationships with individuals with Down syndrome, many doctors’ experience is
limited to the hospital. In medical school, when on rotation, doctors see
patients with Down syndrome who put flesh and blood to the list of potential
problems they learned in class– premature birth, heart defects, leukemia,
celiac disease, Alzheimer’s. They don’t see the majority of the population with
Down syndrome who are not admitted to the hospital for long stints. They don’t
see the kids at Special Olympics who are racing around with a broad smile. They
don’t see the teenager eating dinner with his family. They don’t see the woman
who lives on her own and walks to work every day…

Doctors also embody an exaggerated version of modern cultural values surrounding success, achievement, and intelligent. The developmental pediatrician I spoke with said, “Most of my colleagues think having an IQ lower than 120 is a tragedy.” (An IQ of 100 is normal. Most people with Down syndrome have IQ’s between 50 and 80.) It’s hard to imagine a person with Down syndrome becoming a doctor. It’s hard for a doctor to imagine a happy and fulfilling life as a person with Down syndrome.

Finally, doctors are afraid. In recent years, parents have begun to sue doctors who haven’t given them a prenatal diagnosis in the case of severe disability. Doctors often push for prenatal screening because they fear a lawsuit if they haven’t given a woman all the information available about the child in her womb.

Fear, cursory information, experience with children who are suffering, value placed upon academic achievement–all contribute to a culture that inadvertently devalues the lives of individuals with Down syndrome. Hopefully, that culture is changing, with the provision of greater resources to inform people within the medical profession about the realities of life with Down syndrome, and with programs like that of Robert Wood Johnson Medical School to introduce medical students to families with children with disabilities in their home context.

Without modern medicine, Penny would have a hole in her heart, a life expectancy of 25 (instead of 60), chronic ear infections, and any number of other physical difficulties. I am grateful for the dozens of doctors who have participated in her care over the past five years, and I am hopeful that hers will be but one more story that begins to change the cultural expectations and fears surrounding Down syndrome.