February 13, 2015

Proposed Indiana law hopes to provide parents with better prenatal information about the disabilities facing children

A view of the Indiana Statehouse in Indianapolis. (File photo by Natalie Hoefer)

A view of the Indiana Statehouse in Indianapolis. (File photo by Natalie Hoefer)

By Brigid Curtis Ayer

Getting a prenatal diagnosis of a child’s disability can be a heart-wrenching experience. To add to the stress, many health care facilities are ill-equipped to provide information on the child’s disability or prognosis. Parents facing this situation have felt pressured by some members of the medical community to abort their unborn children, according to testimony given by several Indiana parents before the House Public Health Committee during a Feb. 2 meeting.

Rep. Ron Bacon, R-Chandler, wants to change that situation. He has authored a bill which would require health care providers to offer parents who learn that their preborn child has a disability to have access to information, resources and disability support groups.

The bill, House Bill 1093, which passed the House Health Committee, requires the state Department of Health to collect the information and disseminate it to health facilities and health care providers. The Indiana Department of Health supports the legislation. The bill is expected to pass the House before the end of the month.

Nina Fuller experienced firsthand the stress and trauma of learning her preborn child had Down syndrome.

Following an amniocentesis, she was told her daughter had Down syndrome. “I had never been exposed to or had been around anyone who had Down syndrome. I didn’t know what their capabilities were, and I was looking for information,” she said.

A doctor directed Fuller to go to the local library. Fuller said she found two outdated books published in 1977. “I had nowhere to turn for information on what the future of my child would be,” she said. “My husband and I decided we would change that.”

So they founded SMILE on Down Syndrome, an organization that gives support to parents of children with this condition and information about it to medical professionals. The Fullers became a first-call referral service for doctors whose patients were going to have a Down syndrome child.

Buffy Smith shared her experience of receiving a prenatal diagnosis of Down syndrome in early 2012. Smith’s doctor told her she had a one in nine probability of carrying the child full-term.

“The doctor began telling us about the lifelong health implications, outlined a grim outlook for education, and painted a picture of a terrible prison sentence for this preborn child,” she said. “My immediate thoughts were to abort.”

Smith said she wasn’t alone in her thinking to abort as she reported that roughly 90 percent of mothers who receive a prenatal diagnosis of a preborn child with a disability terminate their pregnancy. While Smith chose life for her child, she spent the final months of her pregnancy “living in a silent hell” due to the lack of information she had about Down syndrome.

Lisa Wells, executive director of Down Syndrome Indiana, who also testified in support of the bill, said she hears stories like these “on a regular basis.” Wells said there are roughly 7,000-8,000 individuals living in Indiana with Down syndrome. And the life expectancy has increased significantly in the last 60 years in the United States.

According to Wells, in 1955, life expectancy for a child born with Down syndrome was nine years. In 1980, it was 35 years. Today, a person with Down syndrome has a life expectancy of 60 years.

Sue Swayze of Indiana Right to Life, who also testified in support of the bill, said, “We think it’s important to provide information and a range of options available so that parents can discuss, learn and have hope.”

Rep. Peggy Mayfield, R-Mooresville, read a letter from a constituent who received a poor prenatal diagnosis with insufficient information in 1997. The constituent said she felt “bruised, bullied and full of anxiety” following a visit to a neonatal specialist in Indianapolis. She was pressured by doctors to have an amniocentesis immediately because she was at 19 weeks.

Mayfield said this woman realized what the doctor was really saying is that her baby had a disability, so they needed the amniocentesis that day so she could abort her baby before she reached the 20-week mark. Mayfield emphasized that parents need resources to help them understand the diagnosis, prognosis and support available at the moment of being told something is wrong with their baby.

Mayfield said the reason she read this letter, and is a co-author of this bill, is because the letter was from her sister-in-law. “I remember the torment they were going through in this situation.”

Glenn Tebbe, executive director of the Indiana Catholic Conference, who testified in support of the bill, said, “Each human being, created in the image and likeness of God, has dignity, and the Catholic Church supports this bill because it gives parents the resources and support they need to prepare prior to and after the birth of their child.”

Bacon said that while he was not aware of this being as significant a problem in the metropolitan areas of the state, it has been a problem in the outlying areas, and the legislation would give parents the resources they need.

(For more information about the Indiana Catholic Conference, its Indiana Catholic Action Network and the bills it is following in the Indiana General Assembly this year, log on to www.indianacc.org. Brigid Curtis Ayer is a correspondent for The Criterion.)

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