April (Web-only) 2005

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Women whose babies are prenatally diagnosed with Down syndrome report that "their obstetricians had failed to provide enough up-to-date printed material" and "felt rushed or pressured into making a decision about continuing the pregnancy." The study of mothers whose children have Down syndrome was published in the American Journal of Obstetrics and Gynecology.

One woman quoted in the study said that in 1999, when her child was diagnosed with Down syndrome, the doctor "showed a really pitiful video first of people with Down syndrome who were very low tone and lethargic-looking and then proceeded to tell us that our child would never be able to read, write, or count change."

In response, senators Sam Brownback and Ted Kennedy are sponsoring legislation that would require doctors to provide current medical information about any diagnosed disability after a prenatal test, along with treatment options, the expected development of the child, and information about local support communities.

Testing babies while still in the womb is normally offered by doctors, and often recommended to women more than 35 or couples with other risk factors. Many states require doctors to offer prenatal genetic testing to all pregnant mothers. However, there are no treatment options for the genetic diseases tested for, such as cystic fibrosis, spina bifida, or Down syndrome.

"A lot of the testing is done for disease processes that we really can't do anything about," says Stephen Nelson, staff neonatologist and director of the Neonatal Transport Service at MeritCare Children's Hospital in Fargo, North Dakota. "Our ability to diagnose diseases prenatally exceeds our ability to treat."

Prenatal testing is a way of learning valuable information ...