Saturday, September 29, 2012

Sharing their challenges: Moms of Down syndrome boys armed with information

by Dorothy McKnight from Daily Press:
Look around you; there is beauty everywhere. The beauty that is seen daily might be outer beauty or someone's inner beauty.
Families that include a member who happens to have Down syndrome see the beauty in their children everyday.
But there was once a time in American society when parents who gave birth to a baby with Down syndrome were advised to place the infant in an institution and move on with their lives. Even when they decided to bring their child home, parents were not given much encouragement that their son or daughter would have a good "quality" life.
With advancements in genetics and prenatal care, many women who learn during their pregnancy that they will be having a baby with Down syndrome are able to prepare and educate themselves about their child's diagnosis.
Both Cindy Vader and Lourie Schuenke of Escanaba faced those same decisions themselves when they gave birth to their sons, both born with Down syndrome. In each case, their little boys have brought such joy into their own lives and the lives of their families, the women are now motivated to encourage and support other women who are facing the same choices they faced.
Cindy and Lourie are members of the Upper Peninsula Down Syndrome Association based in Marquette yet serving the entire Upper Peninsula, and are working hard locally to provide information to families of children with Down syndrome.
"The Upper Peninsula Down Syndrome Association started as a group of parents getting together to reach out to each other for support and to reach out into our community for awareness," said Lourie.
Jacob, the only child of Cindy and her husband, Len, was born with Down syndrome 15 months ago. The mother of two sons, Lourie's younger child, Konner, 5 1/2, also has Down syndrome.
Cindy learned of her baby's diagnosis during her pregnancy. While undergoing a routine prenatal exam, she was given an ultrasound and saw her unborn child for the first time.
"During the ultrasound there were no evident markers for Down syndrome, he looked perfect," Cindy said with a tender smile. "I even saw him sucking his thumb."
But Jacob's condition was diagnosed during a subsequent amniocentesis that her doctor recommended due to her being high risk because she was already in her late 30's when she became pregnant.
"For me, knowledge is power," said Cindy. "The test showed I was going to have a little boy with Down syndrome. Due to my age I knew there was a chance but the doctor called me at home to tell me for sure. My husband wasn't home so the doctor's words felt like a punch to the stomach. I didn't have any information about Down syndrome and didn't even know anyone with Down syndrome."
After discussing the call with her husband, Cindy said she was upset when subsequent phone calls yielded no offer of information or assistance.
"When I think about it, It still feels like it was just yesterday," she said.
Cindy then decided to take a few days off work to education herself about her unborn baby's diagnosis. After connecting with another soon-to-be-mother who was also expecting a child with Down syndrome, she learned about the support group.
Lourie's discovery of her baby's diagnosis didn't become evident until after his birth.
An ultrasound was inconclusive and suggested that the baby might be developing a tumor on the base of his brain and he might be born with cerebral palsy. Subsequent ultrasounds showed no tumor and doctors said that her child was healthy. Down syndrome was never mentioned.
"His diagnosis of Down syndrome didn't even occur until after he was born, and he had so many medical issues they took priority over everything," Lourie said.
But Lourie soon came to the realization that the road on which she was about to embark with her little son was going to be a rocky one due to those medical issues. A day after his birth, Konner was taken from St. Francis Hospital where he was born, to Marquette General where he spent the next 26 days in the Neonatal Intensive Care Unit (NICU) before he was airlifted to Children's Hospital in Milwaukee. Konner was born with pneumonia in both lungs and it was discovered that he a large hole in the center of his heart which needed a full AV canal repair. He also was born with duodenal atresia, and malrotation of the colon. Her son also had other medical issues and later had a G-tube placed, which is a tube to the stomach for feeding. He underwent three surgical procedures the first day in Milwaukee.
"I was told he was not going to survive," Lourie said.
Almost three months after his birth, Konner was allowed go home from the hospital for the first time.
But Konner's ordeal wasn't over. He still needed surgery to correct his heart condition.
"He weighed 6 pounds, 13 ounces when he was born but by the time a week had passed, he was just about 4 pounds," Lourie said. "He needed to have the heart surgery and he had to be at a certain weight in order to undergo open heart surgery and survive."
More than 5 years later and with a total of 15 surgeries under his belt, Konner is now a student at the ISD Learning Center.
"He's doing very well there," Lourie said. Although due to his medical issues, most milestones were delayed. Konner didn't walk until he was almost 3. He continues to undergo physical and occupational therapy as well as speech therapy.
"We knew that Konner's jaw and surrounding muscles were weak so he began learning to use sign language when he was barely two and is now trying to learn to verbalize along with sign," Lourie said. "He's also had four surgeries on his ears and that might have contributed to why he was unable to talk. He wasn't able to hear in the first place."
Lourie smiles when she speaks of the special relationship between Konner and his older brother, Brendon16-years-old. "They're great together, " she said.
So what hopes for the future do both ladies have for their sons?
"I have as much hope for Konner as I hope for my 16-year-old son," said Lourie. "None of us have any guarantees for our children. There are many typical children who develop serious problems as they grow up and you don't give up on them. So why shouldn't I expect the best for Konner?"
Cindy expressed even more encouraging news for families with children who have Down syndrome.
"With more research and more therapies that are becoming available, I've learned of more children with Down syndrome graduating from college and even getting master's degrees," she said.

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