Idaho bill provides real help for parents after a Down syndrome diagnosis

Idaho Governor Brad Little signed a law on March 21 intended to encourage and support families that receive a prenatal diagnosis of Down syndrome. Advocates of Senate Bill 1270, also known as the Down Syndrome Diagnosis Act, say that it will better serve families who receive a Down syndrome diagnosis.

According to the Post Register, the new law requires the Department of Health and Welfare to create an “up-to-date, evidence-based support sheet about Down syndrome that has been reviewed by medical experts and the Idaho Down Syndrome Council.” The support sheet will also include contact information for Down syndrome support groups and resources, and it will be distributed to health care practitioners, so that they can offer it to parents who receive a Down syndrome diagnosis.

“The goal of this bill is to take that fear and isolation away and provide support and hope,” Mary Murray, President of the Idaho Down Syndrome Council and Vice President of Eastern Idaho Down Syndrome Family Connect, told EastIdahoNews.com.

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“Every child diagnosed with Down syndrome is not the same. It’s easy to categorize someone with Down syndrome by saying ‘this is how it’s going to be.’ But that’s not true,” says Murray. “We’ve never met somebody who has a child with Down syndrome who does not feel it’s made their life better, but when you get that diagnosis, it (feels) so devastating and we want to help close that gap.”

Murray, who has a son with Down syndrome, talked about her own experience being encouraged to have an abortion after prenatal testing revealed that her son may be born with the condition. “They did an ultrasound and sent us over to a specialist. The first thing she said was ‘You have one week left to abort in Idaho. We’re suspecting some chromosomal issues and so we need to get some testing done,’” she said.

Murray chose life for her son, but unfortunately, many parents are given the same advice to abort. Even those who don’t find out until after birth recount dealing with doctors who were unable to offer any positive advice or encouragement.

Carey Walton, whose adult son Jared has Down syndrome, told the Post Register of her own experience giving birth to Jared in 1982.

“We were told in the delivery room that there may be chromosome issues with our child,” she said. “Then we were told they suspected Down syndrome… A doctor told me he recommended I take him home and just love him, but I also had the option of having him institutionalized. Another doctor told me not to hate my husband if he left, as it was difficult for men to handle these things. These weren’t exactly encouraging words. I remember sitting in my hospital bed holding my baby and crying because I had no idea what the future held for him or for us. We were very scared and lost. No one we knew could help us, none of them knew anything about Down syndrome.”

Like Murray, Walton and many other parents of children with Down syndrome showed up to testify in support of the bill, which they say is a real victory for the Down syndrome community.

“We wish other parents wouldn’t have had to face these same challenges but are so grateful to know things will change; parents can now be informed and educated,” Walton said. “Hopefully this will reduce fear and shed light on how bright the future can be.”

The bill will go into effect July 1.

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