Gov. Little signs Down Syndrome Diagnosis Information Act and local group is celebrating
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IDAHO FALLS – A bill aimed at helping families with kids who have Down Syndrome was signed into law earlier this week and a local group couldn’t be happier.
Mary Murray, President of the Idaho Down Syndrome Council and Vice President of Eastern Idaho Down Syndrome Family Connect, has been working with lawmakers and others since 2020 on the Down Syndrome Diagnosis Information Act.
Governor Brad Little signed the measure on Monday surrounded by supporters of the bill after it passed unanimously in both the House and Senate.
“We’re excited and proud that we’re going to be able to better serve new parents who are getting a diagnosis of Down Syndrome,” Murray tells EastIdahoNews.com.
Eastern Idaho Down Syndrome Family Connect works with about 150 families in the region to provide support, access to services and other resources.
The bill, which takes effect July 1, requires the Idaho 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.” Under the law, health care practitioners are required to provide the sheet to expectant parents receiving such a diagnosis.
“The goal of this bill is to take that fear and isolation away and provide support and hope,” Murray says.
Murray speaks from personal experience. The Idaho Falls woman has a son with Down Syndrome and remembers feeling fearful when her son was diagnosed during pregnancy.
“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,'” Murray recalls.
Murray was 20 weeks along at the time and Idaho law allowed abortions up to 22 weeks. On Wednesday, Idaho became the first state to enact a law modeled after a Texas statute banning abortions after about six weeks of pregnancy and allowing it to be enforced through civil lawsuits.
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For Murray, abortion was not the answer. Ultimately, Murray had the option of seeking medical care in Salt Lake City or Seattle and the latter is what she chose.
Murray’s son, Eli, was born in Washington and there were some significant health challenges early on.
Eli was born with his intestines outside of his body so there was an initial surgery to put them back in. Then at seven weeks, he had open-heart surgery.
Other surgeries followed, but despite initial setbacks, Murray says Eli is a fully-functioning, healthy child today and she’s grateful for the care he received that set him on that path.
“He probably wouldn’t have survived being born in Idaho Falls just because we don’t have quite as large of a medical capability,” she says.
A diagnosis that Murray now describes as the greatest blessing in her life felt devastating in the beginning because of the way it was presented to her. The desire to make the initial diagnosis more hopeful and improve access to information about treating someone with Down Syndrome in Idaho was the main driving force behind Senate Bill 1270.
“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.”
Under the Down Syndrome Diagnosis Information Act, expecting couples will now be given an information sheet with information about the positive aspects of Down Syndrome as well as possible medical issues that could be associated it.
“There are so many treatments and therapies to help with things the child may struggle with,” Murray says.
The information sheet will also include contact information for support groups and organizations that deal with Down Syndrome. It mandates Health and Welfare post the information on its website and meets annually with the Idaho Down Syndrome Council to ensure the information sheet is kept up to date.
Today, Eli is 7 years old. He attends Holy Rosary Catholic School in Idaho Falls, where Murray says he is fully embraced and accepted by his teachers and classmates.
Murray says Eli teaches her so much about the simplicity of life and what matters most and she hopes this bill will help families, medical providers and the general public change the way they think about Down Syndrome.
“This is the best adventure I’ve ever had in my life. It’s where I’ve found my true purpose because now I work with (hundreds of families who have kids with Down Syndrome),” Murray says. “We’re hoping that now, because of our experiences and in this day and age when there is so much information about Down Syndrome, (people will realize) those with Down Syndrome can live vibrant, wonderful lives and contribute to society.”