Grad Student Inspires New Bill

Pregnant mothers of babies with Down syndrome will be told about the condition in a more sensitive and informative manner if Harvard Medical School and Kennedy School of Government student Brian G. Skotko has his way.

His recent study of the negative experiences of mothers who are told that their unborn children have Down syndrome has prompted an new bill in Congress addressing the subject.

The bill, introduced at a press conference yesterday and entitled the “Prenatally Diagnosed Condition Awareness Act,” seeks to provide current and positive information to pregnant mothers who are told that their children will have Down syndrome.

The congressional bill also asks that mothers be provided with further support after their child’s birth.

Down syndrome is a “genetic condition that causes delays in physical and intellectual development” and typically causes “mild to moderate impairments,” according to the National Association for Down Syndrome.

The bill—introduced by Sens. Edward Kennedy ’54-’56, D-Mass., and Sam Brownback, R-Kan.—will attempt to implement the changes Skotko discussed in his study, setting aside $25 million in federal funding to extend services that provide support to mothers.

Skotko called the introduction of the bill “a celebration for all families who have a child with Down syndrome.”

The bill draws on Skotko’s experiences at the Children’s Hospital in Boston where he noticed the “frustration, anger, and overall discontentment” of parents who receive a prenatal diagnosis of Down syndrome.

“The delivery of a diagnosis of Down syndrome doesn’t need to be a gloomy affair,” said Skotko, who himself has a 24-year-old sister with the condition.

In his survey, Skotko found that the announcement of the Down syndrome diagnosis is usually poorly done and mothers are often encouraged by doctors to have abortions or put their children up for adoption.

One mother who was surveyed described the way her genetics counselor explained the condition.

He “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 (in 1999) that our child would never be able to read, write, or count change,” read the survey.

“I was completely frightened when I was given the news,” said Beth Allard of Franklin, Mass., who spoke of her son Ben’s diagnosis at yesterday’s press conference.

Despite the dismal future doctors predicted for Ben, Allard describes her son as “amazing.”

“He’s done everything they said he wouldn’t do and more,” she said, adding that having a son with Down syndrome has “opened up our eyes.”

“We love him to pieces,” Allard said of her son, citing the “unconditional love, joy, and positive experiences” that came from Ben’s birth.

In his study, Skotko outlines seven recommendations for informing a pregnant mother of her child’s condition.

According to the study, doctors should use sensitive language when discussing the issue, provide up-to-date information about Down syndrome, and distribute information about local support groups. They should also emphasize that those with Down syndrome have the potential to contribute positively to their communities.

“We don’t want a world where parents feel driven to justify their children’s existence. We need to link parents with these programs so that they are equipped with all the information they need to hopefully make a life-affirming choice,” said Sen. Brownback at the press conference.