It can be difficult for new or expectant parents to learn that their child has been diagnosed with Down syndrome – and legislators want to ensure that parents have up-to-date, evidence-based information when that diagnosis happens.
A bill (A-3233/S-475) advancing in the Legislature would require doctors, midwives, and genetic counselors to provide printed information regarding Down syndrome, including details about developmental outcomes, treatment options, and support services.
Advocates for families of children with Down syndrome say medical providers aren’t giving them all the information they need to know, noting that obstetricians frequently haven’t received specialized training in Down syndrome and often have no information on hand to give to parents.
As noninvasive prenatal screening is becoming more common, there are more patients who want to know whether their child has Down syndrome before birth, including some who then choose to have abortions.
Learning about Down syndrome will help parents prepare for the challenges ahead, while also clearing the way for early interventions that will aid children in their development, according to Thomas Baffuto, executive director of The Arc of New Jersey, which advocates for and provides services to people with intellectual and developmental disabilities.
“A diagnosis of Down syndrome can be frightening if parents are not properly educated about the realities of the condition,” said Baffuto, who later added: “Perhaps most importantly, this bill will educate parents about the fulfilling lives individuals with Down syndrome are capable of living.”
New Jersey would join 14 other states with similar laws. The National Down Syndrome Society and other organizations have supported state-level bills after the federal government didn’t fund a 2008 federal law intended to encourage doctors to provide Down syndrome information to parents.
A commonly used, noninvasive prenatal test for Down syndrome and other conditions became available for the first time in 2011. This is expected to increase the number of elective abortions stemming from a diagnosis of Down syndrome. While these abortions aren’t tracked, an American Journal of Medical Genetics paper released in January estimated that abortions reduced the number of children born with Down syndrome by 30 percent in 2007 – when more invasive tests were the only ones available.
Ann Marie “Nancy” McCrea Iannone pointed to a booklet prepared by the Joseph P. Kennedy Jr. Foundation as an example of what doctors could provide to parents. The booklet, “Understanding a Down Syndrome Diagnosis,” notes that people with Down syndrome have varying experiences.
“While people with Down syndrome do face challenges, recent advances in healthcare, education, and public attitudes have greatly improved their lives,” according to the booklet. “This progress has given them more opportunities as valued members of their families and communities. This means that more people with Down syndrome are finishing school, finding jobs, and forming meaningful relationships.”
Iannone, a Gloucester County resident who teaches legal analysis at Rutgers School of Law-Camden, has a daughter with Down syndrome. When Iannone received a prenatal diagnosis 11 years ago, she was left in the dark.
“Despite the fact that my … healthcare caregivers were wonderful people and provided great emotional support, they didn’t give me one piece of information about Down syndrome,” Iannone said. “So I was Googling cold, emotional, upset – and that’s not a good recipe to find credible, reliable information.”
Iannone, who has written books on raising children with Down syndrome, said she’s spoken with thousands of parents in similar situations, including many in South Jersey.
In one instance, she said, she met a parent whose doctor had scheduled an abortion before even providing a diagnosis, while another mother who had moved from Boston had to rely on help from doctors there to find local support services.
While some doctors provide good information, Iannone said, what others “choose to give us is often their own prejudice, couched in such phrases as, ‘Statistically, most people terminate.’ ”
Bill sponsor Assemblywoman Gabriela M. Mosquera (D-Camden and Gloucester) said information is crucial to giving families hope.
“Being a parent is difficult enough and just when you find out that there are going to be some health issues with your child, you want to be able to know what is out there,” in available services, Mosquera said.
The Assembly’s Women and Children Committee released the bill on a 5-0 vote earlier this month. The Senate passed its version of the bill by a 38-0 vote in October 2014. Senate President Stephen M. Sweeney (D-Cumberland, Gloucester, Salem), whose daughter Lauren has Down syndrome, is a sponsor of the Senate version.