TRAVERSE CITY — Nicki McFadden had three boys before she finally gave birth to a little girl.
So when she learned 8-week-old Ashlyn had Down syndrome, it was “devastating,” McFadden said.
“That whole first year was a blur. Plus I worried about everything under the sun. You worry about what’s going to happen later on, about other people’s reaction to her,” she recalled.
As it turned out, Ashlyn was one in a “bubble” of babies born with Down syndrome in the space of a few years, said Heidi Mueller, whose son, Joshua, was another. After discovering that their best support was each other, the babies’ moms got together and revived a long-slumbering peer group called the Down Syndrome Association of Northwest Michigan.
“It started out being more of a play group,” said Mueller, of Traverse City, now president of the association. “It was kind of social and kind of learning to begin with. Then we decided to make it more formal because we realized that one of the things we wanted to do was reach out to new moms. We realized how powerful and critically important a thing it was.”
Now the association provides accurate and timely information about Down syndrome so new parents can make educated choices. The group also can connect new parents with others who have stood in their shoes.
“We have people in the group who are willing to meet families here in the unit,” said Bonnie Cleland, a maternal/infant/child social worker at Munson Medical Center. “They’re a key component in our work and my work on my team. They’re often our first call.”
Down syndrome is a genetic condition in which a person has 47 chromosomes instead of the usual 46. In most cases it occurs when there is an extra copy of chromosome 21, causing problems with the way the body and brain develop and resulting in a combination of physical, medical, and cognitive disorders which vary in severity from case to case.