A new federal law in the United States affecting babies with Down syndrome has been welcomed by people who believe there has been too much emphasis on diagnosis of the condition and not enough good information and support offered to parents. The Prenatally and Postnatally Diagnosed Conditions Awareness Act, also known as the Kennedy-Brownback Act after its sponsors in the Senate, requires medical professionals to provide accurate information on the outcomes of people with Down syndrome and inform mothers with a Down diagnosis of their child about adoption resources. Signed into law in October, it applies also to conditions such as spina bifida, cystic fibrosis and dwarfism.

Among those who backed the law is Missouri senator John Loudon, who sponsored similar legislation in his state. He and his wife Gina decided to adopt a baby with Down syndrome as their third child, and found there were far more parents wanting children with Down than there were children with the condition. However, they did manage to adopt Sammy, now three years old. Currently about 250 prospective adoptive parents are registered with the Down Syndrome Association of Greater Cincinnati, a national advocate of adoption.

All the same, there are doctors who think that providing information about adoption when it’s not asked for might appear biased and judgemental to a patient, and that a baby with Down may be hard to adopt. Studies indicate that 80 to 90 per cent of parents who receive a pre-natal diagnosis of Down choose to abort the child, leading to an 8 per cent decline in people with Down in the US in the past two decades. The trend is to extended pre-natal testing to all pregnant women, not just those over 35 who are at greater risk.

Proponents of the federal law mobilised after two landmark studies by Harvard medical student Brian Skotko were published in 2005. Skotko, who has an adult sister with Down syndrome, surveyed 3000 parents of children with the disorder about how the diagnosis was delivered. In most cases the news began with the words, “I’m sorry,” and got worse from there. Information given was “inaccurate, incomplete and sometimes insensitive,” Skotko found. “It was in no way consistent with the advancements and possibilities and support we’ve seen.” ~ St Louis Post-Dispatch, Nov 9