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Law could change how parents are told about Down Syndrome

Sunday - 5/4/2014, 5:01pm  ET

WASHINGTON -- When Heather Sachs' daughter was born with Down Syndrome eight years ago, she wasn't given helpful information or the names of parent groups offering advice and support.

Instead, Sachs tells Maryland lawmakers, she was simply handed a pamphlet, entitled "So You've Had a Mongoloid: Now What?"

On the audio of the Senate Finance Committee hearing where she testified, the gasps from lawmakers and attendees are audible.

According to the National Down Syndrome Society, the condition occurs "when an individual has a full or partial copy of chromosome 21." Down Syndrome used to be referred to as "Mongoloidism," a perjorative term that was dropped by the World Health Organization in 1965.

Yet as Sachs' experience shows, the term still showed up in medical literature that was being distributed as recently as eight years ago.

Sachs, a Potomac resident who serves as the Maryland State Ambassador of the National Down Syndrome Society, told lawmakers that her experience is not unusual.

"The receipt of outdated and inaccurate information upon receiving a diagnosis of Down Syndrome is pervasive nationally and in Maryland," Sachs said.

Kathleen Wachter, a Frederick County mother of nine, agrees with Sachs. Too often, expectant parents are given grim assessments of what kind of lives their children may have.

When her youngest son, Henry, was born, Wachter says she was told next to nothing about his condition by health professionals following his birth.

"They knew that he had Down Syndrome, but nobody told us in the hospital," until a doctor who completed a test told the Wachters that their son had the condition, Wachter recalls.

When Wachter broke down and cried over her frustration in getting information, she says a nurse asked her if she was crying because she'd been given her son's diagnosis. Then "she just left," Wachter recalls.

Wachter has a nursing background and says she can't understand why she wasn't offered information about raising a child with Down Syndrome, or contact information for other parents who've raised children with the condition.

Both Wachter and Sachs welcome a change in Maryland law that will require the Maryland Department of Health and Mental Hygiene to identify "up-to-date, evidence-based written information about Down syndrome," and make it available to health care providers.

The bill calling for the change - Senate Bill 654 - will be signed by Maryland Governor Martin O'Malley on Monday.

Wachter, and other advocates for families of children with Down syndrome, say while the law will require information to be compiled by state health officials, it leaves a communication gap.

According to the bill, health care providers caring for families "may" provide that information to expectant mothers who undergo prenatal testing, and families who have a child diagnosed with the condition.

Wachter says the law should have included the word "shall"; that would make it a legal requirement versus an option to make sure parents get information that could prove life-changing for their children.

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