Missouri Down syndrome advocates applaud new law

From The St. Louis Post-Dispatch Nov. 9:

CHESTERFIELD, Mo.— When Missouri Sen. John Loudon and his wife, Gina, decided to adopt their third child, they knew three things: They wanted a little boy, they would name him Samuel and he would have Down syndrome.

"This was always part of the plan," said Gina Loudon as their now 3-year-old Sammy darted in and out of the living room in his slippers, giggling loudly."We didn't know much about how it was going to happen, but we just knew."

The politically active couple with deep roots in the anti-abortion movement said their passion for Sammy spurred them to take legislative action on behalf of children with Down syndrome. It also put them in the center of an ongoing national discussion about genetic testing, the acceptance of people with disabilities and the type of information about Down syndrome that new or expecting parents were getting from their doctors.

Various studies estimate that 80 to 90 percent of parents who receive a prenatal diagnosis of Down syndrome through genetic testing choose to abort the fetus. Researchers believe this is the cause behind an 8 percent decline in people with Down syndrome in the United States in the past two decades.

In 2007, with similar federal legislation already in the works, John Loudon pushed through "Sammy's Law." The law requires medical professionals to provide accurate information on the outcomes of people with Down syndrome and inform mothers with a Down diagnosis of adoption resources.

The couple are now celebrating the most recent step in what they view as a mission. In October, the bipartisan Kennedy-Brownback Pre-natally and Post-natally Diagnosed Conditions Awareness Act was signed into federal law.

But some physicians and abortion-rights advocates worry that such legislation could pry open the door of privacy between doctors and patients. And they question the law's premise that parents are terminating pregnancies without full information about Down syndrome.

When the Loudons decided to adopt, they found there were far more parents wanting children with Down than there were children with the condition. Currently about 250 prospective adoptive parents are registered with the Down Syndrome Association of Greater Cincinnati, a national proponent of the adoption of children with Down.

The Loudons said the waiting list gave them a wake-up call about genetic testing, and its impact on the population of people who have Down. It is also an issue that has deeply galvanized advocacy groups for the disabled. They argue that not enough positive things are being said about Down syndrome and other conditions when parents first get a prenatal or postnatal disability diagnosis in a doctor's office.

Gina Loudon said medical staff offered Sammy's biological mother little comfort or information about Down syndrome after his birth. Nor, said Loudon, was she told that there were people who would want to adopt a baby with special needs.

"When she finally heard there were people wanting to adopt him, she said she was shocked. She said, 'You mean there are people who want these babies?'" Loudon said.

The Kennedy-Brownback Act is designed to establish databases of information and registries to give parents better access to support, adoption resources and accurate information about Down syndrome and other genetic conditions such as spina bifida, cystic fibrosis and dwarfism, both before and after birth.

The law was co-sponsored by Sens. Sam Brownback, an anti-abortion proponent from Kansas, and Edward Kennedy of Massachusetts, a Democrat who supports abortion rights. Republican Sen. John McCain of Arizona joined on as a co-sponsor in September after selecting Sarah Palin as his vice presidential running mate. Palin's youngest son, Trig, was born last spring with the condition.Advocates for the disabled say the need for the law transcends ideological lines.

"I just think what we have to do here is not about pro-life or pro-choice, it's about pro-information," said Linda Orso, executive director of the Down Syndrome Association of Greater St. Louis. "We have to get accurate information to the medical community so that the parents can make an informed decision."

But some physicians worry that such laws could lead to mandates about what's said between a doctor and a patient, threatening to erode patient trust. Diana Gray, a professor of obstetrics and gynecology at Washington University Medical School specializing in genetics, said she strove to give accurate, unbiased information that does not direct a patient either way on whether to terminate a pregnancy.

She said she often talked with patients over several days to answer their questions, talk about lifelong outcomes for their children and provide links to support groups during a very emotional time. But providing information about adoption when it's not asked for might appear biased and judgmental to a patient, she said.

It also doesn't take into account the likelihood that a baby with Down may be hard to adopt because of the higher probabilities the child may have major heart defects and other serious medical problems, she said.

"We don't have any good data to show how many of these children are adoptable," Gray said. "I think that's a cruel option to hold out to someone."

Down syndrome is caused by an extra copy of Chromosome 21, causing varying levels of disabilities, including decreased intelligence, slackened muscle tone, gastrointestinal problems and heart defects. In the past 25 years, however, the
average life expectancy for a person with the condition has more than doubled to 56 years, according to the National Down Syndrome Society.

Those with the condition also have better access to early intervention programs and inclusion in regular public school classrooms. Support organizations and disability networks have also fostered increased independence.

Orso, who has a 30-year-old daughter with the condition, said parents of children with Down have just as many accomplishments to celebrate as parents of children without the condition: high school graduations, first apartments, full-time jobs and even marriages.

Proponents of the federal law mobilized after two landmark 2005 studies penned by Harvard medical student Brian Skotko, who has an adult sister with Down syndrome. Skotko surveyed 3,000 parents of children with the disorder about how the diagnosis was delivered.

In most cases, the news began with the cryptic words, "I'm sorry," and got worse from there, said Skotko, who is now a physician with Children's Hospital of Boston.

"The majority of the parents said that the information they got from their physicians was inaccurate, incomplete and sometimes insensitive," Skotko said. "It was in no way consistent with the advancements and possibilities and support that we've seen."

Orso said it was something parents of Down children had known anecdotally for years. She said some physicians told parents their children wouldn't be able to count change, go to regular school or live on their own.

One parent dealt with a physician who repeatedly phoned to remind her that the legal deadline was nearing for an abortion. And some doctors are now asking women who have a prenatal diagnosis to sign a legal form stating that she has decided not to terminate the pregnancy.

"I know the doctor thinks he or she is doing the right thing," said Orso. "But they're often not giving them a fair, honest chance to make an informed decision."

John Loudon said he was inspired to introduce legislation in Missouri by St. Louis pediatrician Jan Mueller, who told him about the American Academy of Obstetrics and Gynecology's revised recommendation that all pregnant women be screened for the condition.

Previously the Academy had recommended screening for women 35 and older, because women have increasing chances of conceiving a child with the condition
as they age. Mueller, who will soon begin talking with area physicians about Down through a program sponsored by the St. Louis Down Syndrome Association, said expanding the scope of the screening without improving how physicians deliver a positive diagnosis was reckless.

"If you're not doing it well with the ones that you are already testing, why in the world we want to expand that ineptitude?" she said.

The Loudons said they were certain they wanted to adopt a child with Down even before they were married. The couple, who worked with the disabled in high school and college, understood early on in their courtship that people with the condition have a certain grace, and can bring great peace to those who help care for them.

The couple say Sammy does just that for them and their three other children, including their youngest, Bo, who is six months younger than Sammy.

"See," says Gina Loudon, pointing to Sammy as he does a somersault on the carpet and his little brother tries to follow. "It's like he's the typical functioning brother. Sammy's always in the lead."

Gina said she hoped Sammy would one day graduate from high school, get a full-time job, live on his own and perhaps even marry.

But for now, the family's just focusing on living in "the now." "He teaches us so much about every day," she said. "That you can be happy despite your circumstances."