Prenatal Information To Improve
Indianapolis— Getting a prenatal diagnosis of a child’s disability can be a heart-wrenching experience. To add to the stress, many healthcare facilities are ill-equipped to provide information on the child’s disability or prognosis. Parents facing this situation have felt pressured by the medical community to abort according to testimony given by several Hoosier parents before the House Public Health Committee during a Feb. 2 meeting.
Rep. Ron Bacon, R-Chandler, wants to change that. Bacon has authored a bill that would require healthcare providers to offer parents who learn that their preborn child has a disability 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 healthcare 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, Evansville resident and founder of Smile on Down Syndrome, experienced first-hand 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 around to anyone who had Down syndrome. I didn’t know what their capabilities were and I was looking for information. The doctor directed Fuller to go to the local library. Fuller said she found two outdated books from 1977. “I had nowhere to turn for information on what the future of my child would be,” said Fuller. “My husband and I decided we would change that.” The Fullers became the 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 1-in-9 probability of carrying the child full-term. Smith said, “The doctor began telling us about the life-long health implications, outlined a grim outlook for education, and painted a picture of a terrible prison sentence for this preborn child. 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 disability terminate their pregnancy. While Smith did not choose abortion, 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 Fuller’s and Smith’s “on a regular basis.” Wells said there are roughly 7,000-8,000 individuals living in Indiana with Down syndrome. And life expectancy has increased significantly in the last 50 years in the United States. According to Wells, in 1955, life expectancy for a Down syndrome child was nine years; in 1980, it was 35 years; and today, a Down syndrome individual has a life expectancy of 60 years.
Sue Swayze, representing 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 without sufficient 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 terminate the pregnancy 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.
Rep. 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.”
Rep. 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.
