Doctors Criticized For Way They Deliver Down Syndrome Diagnosis

Some mothers call physicians insensitive when breaking the news, survey finds

Randy Dotinga

Randy Dotinga

Updated on January 05, 2005

WEDNESDAY, Jan. 5, 2005 (HealthDayNews) -- Many mothers of children with Down syndrome say their doctors treated them insensitively after their babies were diagnosed and failed to express proper levels of compassion, a new survey reports.

One doctor suggested, repeatedly, that a mother give her child up for adoption. Another referred to a woman's baby within earshot as an "FLK" -- "funny-looking kid." The survey also found that doctors often dwell on the negative aspects of having a child with Down syndrome without bothering to congratulate mothers on the birth of a baby.

"We found out that mothers are very frustrated and, by nearly all accounts, doctors are falling short," said study author Brian Skotko, a student at Harvard Medical School. "They just don't realize there's a better way to do things."

The survey results appear in the January issue of Pediatrics.

Skotko has a 24-year-old sister with Down syndrome and became interested in the experiences of mothers while co-writing a book about the condition. "Many of them shared with me their frustrations, their anxiety, and their fears of the process when they received the diagnosis of Down syndrome," he said.

However, doctors seemed confident in the way they delivered the news to the mothers, Skotko said. "I wanted to give mothers the opportunity to write report cards for doctors and let them know how they're doing," he said.

Skotko sent surveys to 2,945 mothers of Down syndrome children and received 985 responses from those whose babies were diagnosed after birth. He said he used a questionnaire with a 1-to-7 scale to gauge mothers' satisfaction with how their doctors discussed Down syndrome with them. So it wasn't possible to determine a percentage of those who answered the questionnaire who were dissatisfied with the way their doctors talked to them. However, the majority of the mothers reported being frightened or anxious after learning the diagnosis. Mothers reported that their physicians "talked little about the positive aspects of Down syndrome and rarely provided enough up-to-date printed materials or telephone numbers of other parents" of children with the condition, the study said.

Down syndrome occurs in about one in 800 births, according to U.S. health statistics, and it's most common among children of mothers older than 35. People with Down syndrome suffer from mental retardation and have an increased risk of congenital heart defects, respiratory and hearing problems, childhood leukemia and thyroid conditions. The disease is caused by a genetic malfunction, according to experts.

Many mothers who took part in the survey said they were traumatized when they received the Down syndrome diagnosis after birth. Tests before birth can reveal the syndrome, but women don't always get them and they can be inaccurate, the study said.

Doctors can often make an initial diagnosis by looking at a baby, but can't confirm it until genetic tests are done. In some cases, doctors don't tell mothers of their concerns while they await the test results, Skotko said. "In the process, the mothers have said they feel like they're being avoided. They realize something's wrong, and they can't quite get the answers."

Once parents do get the news, doctors often fail to help them get in touch with support groups and other parents of children with Down syndrome, Skotko said, although he added that physicians have begun to do a better job on that front.

He recommends that medical schools spend more time on Down syndrome and expose students to people with the disorder. "Mothers have said they do want to know about realities, and doctors shouldn't paint the rosiest of pictures," he said. "But what mothers want is not only the medical realities but also the possibilities as well."

Many people with Down syndrome can attend school, hold jobs -- Skotko's sister works at a craft store -- and participate in athletics.

The survey results don't surprise Dr. William Cohen, director of the Down Syndrome Center of Western Pennsylvania at Children's Hospital of Pittsburgh.

"But I think it's getting a little bit better, and that's what the study shows," Cohen said. "There are changes in society and awareness that having a child with Down syndrome is different than what people considered it to be. It was often felt to be inevitably a life of sadness and grief for the parents."

Over time, support groups have helped change perceptions, and training for doctors has improved, Cohen said. For doctors, "it's not about being positive, but being balanced, to acknowledge that there are some problems, but there are things that can be surmounted and overcome."

More information

Learn more about Down syndrome from the National Down Syndrome Society.

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