Down Syndrome Births Are Down in U.S.

"I presumed she would not be able to communicate, to read, to interact with the rest of our family or with the world around her," she told "I was afraid that she would intrude on the lives of her three brothers, and that our family would be home-bound and our lives as we had planned would be thrown into turmoil."

Those fears never materialized. The Fullers went on to adopt another daughter with Down syndrome, Hope.

Dr. Lewis Holmes, head of the genetics unit at MassGeneral Hospital for Children in Boston, said about 80 percent of women who learn before 24 weeks that they are carrying a child with Down syndrome choose to end the pregnancy.

Parents Decline Screening for Down Syndrome

He provides parents with resources to help them make the decision, including a call from another family who is raising a child with Down syndrome.

"Some women have an immediate response and know what they want to do; the mother and father are totally in sync, and all set to go," he said. "But more often than not, there's a lot of soul-searching, and we try to make sure they hear both sides of the story."

But Holmes is seeing an increasing number of women who simply do not want to be screened.

"They say thanks, but no thanks," he said.

Many families who were anxious upon diagnosis say their lives have been enriched by deciding to continue the pregnancy.

Such was the case with Lisa Aguilar of Hemet, Calif., whose 7-year-old son has Down syndrome.

"I decided to keep him, no matter what," said Aguilar, a 43-year-old who is pregnant with her fourth child. "He is the happiest, kindest soul I have ever met. Daniel has taught me some valuable lessons about acceptance and love and being more compassionate."

Studies have shown that families do cope and siblings learn important lessons in patience and empathy for others.

Since the birth of Grace, McLaughlin has been inspired to work as a First Call volunteer and help other parents facing a Down diagnosis.

"It was my lifeline to hope," she said. "These were not horrible stories of what they endured, but really wonderful, enlightening stories, so different from the information that is out there.

"I love Grace and her Down syndrome and everything about her," she said. "I prided ourselves on our intellect. I had a boy and a girl and a handsome husband who is a hard worker. All that outward stuff I thought was important, but I don't find it so important today -- more that is a gift."

And while she supports women's right to choose, she worries about the dwindling number of children with Down.

"I do feel women have their own choice, but they don't realize what they have given up," she said. "What if we don't like brown eyes anymore? What have we lost and what does Down syndrome bring to society that we lose along the way?"

For more information, go to the National Down Syndrome Society.

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