Grand Rounds
The Texas Depart- ment of State Health Services (DSHS) will host “Down Syndrome in the 21st Century” as part of its Grand Rounds continuing education program from 11 am to 12:30 pm on Oct. 5 at the DSHS building, located at 1100 W. 49th Street in Austin. Suzanne Shepherd,
health care chair and past president of the Down Syndrome Asso- ciation of Central Texas, will present the program, which will focus on better under- standing of the disorder and early interventions. For more information and to inquire about registration, email GrandRounds@
dshs.state.tx.us.
the law, highlight the opportunities the bill presents, and assist them in communicating with parents who receive a Down syndrome diagnosis. TMA was planning to offer continuing medical education for viewing one of the videos and completing an evalua- tion and post-test.
PHYSICIAN KNOWLEDGE How up-to-speed physicians generally are on the most recent research and realities of Down syndrome is a sub- ject of some debate. Dr. Hampton says health care professionals he works with are “very positive about the fu- ture for Down syndrome patients” within limitations, as their patients can face widely varying physical prob- lems. In Dr. Hampton’s experience, practitioners are good about relaying the right information. “I think everybody these days is cer-
tainly not dismissing it and saying, ‘Oh, there’s no hope for this child’ or ‘This child will never be able to function in society’ or things like that,” he said. But the Down Syndrome Associa-
tion of Central Texas (DSACT) says it has been common for parents to receive outdated information, if they even get information. That’s what happened to Suzanne Shepherd, health care chair for DSACT’s board of directors, when her son was born with Down syndrome in the late ’90s. At the time, Ms. Shepherd says she
got no information on the disorder from physicians, so she asked a nurse, who pulled some information from the hospital’s medical library. “She didn’t bother to read it, and
she handed it to me. It was way out- dated,” Ms. Shepherd said. “It said babies with Down syndrome will not learn to read or write or walk or talk, and it included an autopsy photo. You can imagine how emotionally sooth- ing that was to a new mother with a 1-day-old baby who was trying to wrap her head around the diagnosis of Down syndrome, to get a handout that showed an autopsy photo.” But when she spoke to Texas Medi-
38 TEXAS MEDICINE September 2016
cine this summer, Ms. Shepherd’s son was 18 and a new high school gradu- ate, and he was looking at college programs this summer with an eye toward attending one next year. “If someone had told me the night
that he was born that he would go to five different proms in high school and have a girlfriend and have the sense of humor that he has, and be looking at a college program by age 19, I wouldn’t have cried every day for six weeks be- cause I would have understood, ‘This kid is truly going to have a wonderful life, with all the essential things that all the rest of us enjoy,’” she said. Ms. Shepherd says she typically
meets with new parents of children with Down syndrome to ask them what they hear from the physician at diagnosis. She says those discussions indicate the passing of outdated infor- mation continues. “We have members with children
who are younger than 12 years old who are still being told that institu- tionalization is an option,” she said. “Which, not only is that developmen- tally very inappropriate, [but] the state-supported living center in Cen- tral Texas, in Austin, doesn’t accept infants anymore. … But most state- supported living centers don’t accept infants, so that’s wrong on a variety of fronts.” Austin family physician Adam
Barta, MD, who presents educational programs on Down syndrome to phy- sicians, notes many OB-Gyns don’t re- ceive much pediatric training in their residency. “In medical school, they may have
had maybe a couple of months of pe- diatrics as a student, and the odds of them having a lot of exposure to chil- dren with Down syndrome or other special needs are not high,” he said.
“Many of them will be unaware of a lot of the medical issues, what it’s like to have a child with Down syndrome, what kids with Down syndrome are like in society today.” When HB 3374 emerged in the last legislative session, the Texas district
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