Annie Barclay knew halfway through her pregnancy that there was a small chance she would give birth to a child with Down syndrome.
Tests had shown some indications of that, but Barclay, 32, was not unduly concerned. Her eldest child had been born without serious health issues seven years earlier. She decided not to have an amniocentesis test that would have given her a certain diagnosis.
“I didn’t care,” she said. “I was not going to do anything different than I was doing.”
But when Eden was born five months ago, a doctor confirmed that the pretty infant had Down syndrome.
“She was beautiful, but our lives have completely changed. I wouldn’t have wanted it any other way,” Barclay said.
Annie and Chad Barclay, 39, who have a 7-year-old son, Elliott, brought Eden home to their Davenport residence with a lot of information on Down syndrome that they had received from a social worker.
“I went home and put those materials in a closet,” Annie Barclay said. “I just wanted to be home with my baby, and she was just beautiful.”
Two weeks later, Barclay was contacted by a woman named Michelle Hornbuckle Hughes. The site coordinator of GiGi’s Playhouse in Moline, Hughes wanted to explain the available services for Quad-City families with a child who has Down syndrome. The two became friends, and Hughes is an important source of information to Barclay.
“She’s my Google,” Barclay joked.
Down syndrome was first explained in 1866 by English physician Dr. John Langdon Down. It is caused by a full or partial extra copy of a chromosome stored in a human gene. It is the most common genetic condition in the United States and affects one in every 691 babies born, according to the National Down Syndrome Society.
Hughes and Barclay agree that while most people have a better understanding of Down syndrome today, there is a need for more acceptance.
“Most people looking at Eden would never have a clue that she has Down syndrome,” Hughes said. “It happens when you tell them.”
Well-meaning individuals often react negatively to the news, Barclay confirmed. “They don’t congratulate you. They say they are sorry, and you get pity looks, and so on.”
But Barclay calls herself lucky. “I feel my family is lucky and I’m the most lucky,” she said.
She finds a lot of help through other area families with children who have Down syndrome. “They are an amazing group of women and fathers who have steered us to the right path and welcomed us with open arms,” she said. “I have never met a more welcoming community than the Down syndrome community,” she added.
Eden is doing well, physically. She does have two tiny holes in her heart and may need to have surgery someday, but that condition might clear up without an operation. In the meantime, her parents plan to raise her the same way as her older brother.
“Down syndrome is what Eden has, it’s not who she is,” Barclay said.
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