ESCANABA - Getting a diagnosis of Down syndrome - either pre-natal or post-natal - can be a stressful thing for a family. Having the medical community be prepared to deal with a families needs is just one of the goals of the Upper Peninsula Down Syndrome Association. UPDSA has done outreach to the medical community on the delivery of a diagnosis of Down syndrome, and hopes to continue its efforts.
Cindy Vader and Lourie Schuenke of Escanaba, are both mothers of children born with Down Syndrome. Each expresses great dismay at the lack of compassion and encouragement on the part of the medical community when dealing with a diagnosis of Down syndrome.
"Generally the medical community suggests termination before anything else," Cindy said. "Then instead of distributing information, they direct you to the internet."
Cindy Vader, at left, and Lourie Schuenke, both members of the U.P. Down Syndrome Association, accept a check for $1,000 from Dorothy Kollmann, representative for the Community Handicapped Awareness Team (CHAT). The funds were presented on behalf of Kollmann’s nephew, William Steuer. Vader is holding her son, Jacob, and Schuenke is with her son, Konner. Both youngsters have Down syndrome.
While neither woman is against prenatal testing, both feel that education should be first and foremost when deciding the future for a woman and her child.
It's important to realize that the options that a doctor might give you is not always the advice that is right for you and it's important to be educated before making any decisions," said Cindy.
As a result of their own experiences, both women hope to serve as encouragers and information providers through UPDSA for families who love someone with Down syndrome.
"With our group, the hospitals notify us when a child is born with Down syndrome," Lourie said. Along with a special kinship from someone who has gone through the same experience, the women are a wealthy source of information and advice.
Because there are no physicians in the Upper Peninsula who specialize in the unique needs of children with Down syndrome - particularly pediatric cardiologists - Lourie said parents are required to travel outside the area to have their children treated by specialists.
"There's lots of travel to speciality clinics," she said. "We have to go out of the area for any kind of health issues dealing with the heart, but in addition to heart problems, children with Down syndrome may have hearing and eyesight problems. There are also thyroid issues and greater incidents of leukemia. We can have blood work done locally, but we generally have to go to Green Bay or Children's Hospital in Milwaukee for any kinds of treatment - even for something as routine as a tonsillectomy."
Cindy added that there's a need for a pediatric anesthesiologist because of problems with the vertebra in the necks of children with Down syndrome.
While it was once thought that the majority of babies with down syndrome were born to women over the age of 40, the facts are the majority of children born are to mothers who are much younger.
"One out of 691 births in the United States is a baby who has Down syndrome," said Cindy, "While the possibility increases for women over the age of 35, more children with Down syndrome are born to women under 35. It's just that younger women are more likely to have babies than older women so the percentage of actual births in both cases make it seem that older women are more likely."
But whether a mother of a child born with Down syndrome is a young mother or an older one, both Cindy and Lourie are strong advocates that parents of Down syndrome children receive the most up-to-date information available and to learn about all the resources that are available to themselves and their child.