Idaho Law Supports Parents Receiving Prenatal Down Syndrome Diagnosis

Idaho enacted a new law last month designed to provide support and encouragement to families that receive a prenatal Down syndrome diagnosis. The Down Syndrome Diagnosis Information Act requires the state Department of Health and Welfare to provide an “evidence-based” and current fact sheet to parents. The information must be reviewed by the Idaho Down Syndrome Council and medical experts.

Republican Governor Brad Little signed the law that requires medical professionals to also provide contact information to parents for Down syndrome support groups and resources.

Idaho Down Syndrome Council President Mary Murray told reporters that the purpose of the new law is to remove the fear and isolation that come with a diagnosis in order to provide support and hope. She pointed out that every child receiving a diagnosis is not the same, and it is not accurate to tell parents “this is how it’s going to be” in all cases.

She said that her organization has never met a parent of a Down syndrome child who does not feel it has made their life better. But she recognized the devastation that comes with an initial diagnosis and her group wants to help “close that gap.”

Murray described her personal experience when she was encouraged to receive an abortion when prenatal testing indicated her son was likely to be born with Down syndrome. She recalled being sent to a specialist after a routine ultrasound, where she was told she had only one week left under the law to abort.

Murray chose to give birth to her son, although many parents are given similar advice about aborting. She said that when parents do not learn of the diagnosis until after birth, they often feel helpless when they do not receive meaningful medical advice or practical support and encouragement.

Carey Walton is another parent who supports the new law. She recalled her experiences after giving birth to her son in 1982. She said that she was told in the delivery room that Down syndrome was suspected and was told to love her child but was told about the option of having him placed in an institution. One doctor told her not to hate her husband if he left her as a result of the birth, and she remembered her feelings of being afraid and lost.

Both Murray and Walton testified before Idaho lawmakers in support of the bill along with many other parents of Down syndrome children. Walton said that all the parents are grateful to know that things will change so that others will know how bright the future for their families can be.