it any longer as a problem that needs fixing.” She would find
it easier to support a treatment for the heart problems that
affect many people with Down syndrome, but “the cognition
piece? I’m kind of neutral on that,” she says. “There is a sense
that cognition is more interwoven than heart defects with
who you are.”
But many parents would be ready to leap for a promising
drug. “I had a lot of fear that I wasn’t doing everything I could
be doing,” says Liz O’Hara, an elementary school teacher from
Connecticut, of her pregnancy with her son Michael, who was
born in July and diagnosed prenatally with Down syndrome.
She took megavitamins and choline supplements, tried acupuncture, and cut down on gluten and dairy. She decided
against taking Prozac for fear of side effects, but she would
have welcomed a treatment that had been well studied and
declared safe. “Part of me would do anything to … I don’t want
to say fix my child, but help my child,” she says.
So far, fetal therapies have been reserved for critical
cases—a cardiac surgery to save a baby’s life, for example.
Haydar says he and Bianchi have talked over the “significant
social hurdles” of trying to intervene for any reason other
than to keep the child from dying. “There’s obviously a chal-
lenge in talking about fetal therapy,” he says. “You don’t want
to go playing around with a developing fetus, potentially
affecting that individual and their family for the rest of their
life, unless you have to do it to save the baby’s life.”
Haydar says he and Bianchi imagine how they would
counsel parents. For example: A woman is informed in a
doctor’s office that her fetus has Down syndrome, with its
accompanying likelihood of intellectual disabilities and heart
defects. Then the doctor would say: “There is a new break-
through, a pill that will reduce the likelihood of intellectual
disability by 50 percent or 80 percent,” says Haydar. “That’s
the best-case scenario. But any time you enter into a conversa-
tion about prenatal anything, those conversations are touchy,
because there is a vast array of feelings that people have.
Diana and I talk about this a lot.”
Bianchi says she regularly receives e-mails inquiring
about prenatal treatment. For people undecided about rais-
ing a child with Down syndrome, the promise of a drug that
improves thinking might tip the scales in favor of continuing
the pregnancy. “My hope is that it will change the conversa-
tion,” she says. “It gives the message that we are not giving up
on your child, that your child has options to get better.”
Bonnie Rochman is a health and science writer in Seattle who is
working on a book about how genetics is reshaping the experience of childhood.
A pregnant mouse at the Mother Infant
Research Institute at Tufts Medical Center.
For people undecided about
raising a child with Down
syndrome, the promise of a
drug that improves thinking
might tip the scales in favor
of continuing the pregnancy.