BOSTON -- About one in every 1,000 babies is born with Down syndrome -- a genetic condition that causes cognitive and developmental delays.

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Rhonda Mann Reports On Down Syndrome

NewsCenter 5's Rhonda Mann reported that a new study suggests the way the diagnosis is communicated to the family can have a significant impact on how they feel about the disorder.

Right after Sarah was born, Lisa Kerr suspected something was wrong with her baby, but it took eight hours before doctors confirmed her fears. Sarah had Down syndrome.

"During our hospital stay, we felt avoided. Especially during that waiting period. Nobody came into our room. I don't think they wanted to be confronted. And that was very hard," she said.

"Perhaps the most saddening and most alarming is doctors who come in right after the birth of the child and say, 'I'm sorry to tell you,' and 'I have bad news to tell you.' And it is not bad news in retrospect," researcher Brian Skotko said.

Despite the advancements in prenatal testing, most families learn that their baby has Down syndrome right after birth. The researchers said that's why there needs to be guidelines to help doctors communicate that news.

"They would like to receive the diagnosis with their partner or husband at the same time in a private setting. Sometimes, doctors have given it to the husband, then put the burden on the husband, who doesn't know anything about Down syndrome, to tell their wife," Skotko said.

Other recommendations from the study include giving parents up to date printed information on the condition, proving them a link to local support groups and talking about the positive -- the possibilities and potentials.

That's something Kerr now knows first hand. She can't imagine life without little Sarah.

"Pure joy. She is the light in every room that we walk into. She loves people and people just love her," she said.

Resources

Read More About Study

Massachusetts Down Syndrome Congress