The Daily News

The Alcohol, Tobacco and Other Drugs Coalition heard from Dave Mohn Thursday night about his experience raising two children with fetal alcohol syndrome (FAS). Mohn is a radio technician who works on airplanes, one of the few in North Dakota, so his job is demanding. He's on call 24 hours a day, seven days a week.

When he and his wife, Susan, were told 20 years ago they couldn't have children, they decided to adopt. The child they adopted was Stephen. He was 5 years old at the time and they were told he had FAS, but no one really knew what it was. "We were told it was like Down Syndrome," Mohn said.

They adopted their daughter Randi around the same time as Stephen, who also has FAS. She was 4 years old.

From left, Dave Mohn explains the effects of fetal alcohol syndrome, using his adopted son Stephen as an example. Stephen, middle, should be as tall as his uncle, Tony Nordick, far right, but because Stephen’s biological mother drank during her pregnancy he is short in stature and has limited mental capacity, among other FAS qualities. Photo by Anna Jauhola Advertisement

Shortly after adopting Stephen and Randi, Dave and Susan got a big surprise — they were having their own baby. The Mohns had two of their own children, Dan, now 17, and Matt, 16. They are both Boy Scouts and Matt is working on a video about FAS for his Eagle Scout project, which will feature Stephen and Randi. The basic message will be how bad alcohol is to drink while pregnant.

Besides raising two children with FAS, the Mohns found out their biological children had muscular dystrophy. However, that didn't stop them from raising all four children.

They lived in Bismarck for most of Stephen's schooling. He was one of the first to be in a mainstream classroom and advance in his own grade level until ninth grade. When he entered high school, the Mohns had moved to Fargo. Stephen then went into a modified program and graduated at the age of 21.

Randi also graduated at the age of 21 and both she and Stephen now live in a group home. "Our goal with both Stephen and Randi was to make them productive members of our society," Mohn said. So they have become — Randi works at Friendship, a program through Catholic Health Initiatives, and Stephen works at the Education Training Center, which is a project by the state, county and Fargo School District. Both do tasks like shredding secure documents and crushing cans.

"You never know what life is going to give you," Mohn said. But, the Mohns were more prepared than most couples to raise children with FAS. Susan had worked in group homes, so she had experience, and Dave volunteered. "We also had a good support system," Dave said.

The life expectancy for FAS children is 25 years — Stephen is at that expectancy and Randi has one year. "I think Stephen will beat it. He's pretty stubborn," Dave said. However, Randi has a seizure disorder and the Mohns don't know when she'll go.

Every 1 in 750 children born has FAS — yet it is the most preventable birth defect. "If you are trying or active, don't drink alcohol," Dave said. The first trimester of pregnancy is the most crucial in development, and is usually when women drink the most because they don't know they're pregnant. Some children are born full FAS, meaning they have the smaller, stunted features like a small head and low birth weight. Others are born FAE — without the physical features but the alcohol affected their mental development. These children are rarely diagnosed because the mother has to admit she drank during pregnancy, and that doesn't happen often.

Stephen in particular was born with the physical features. His mother drank through most of the pregnancy and Stephen was born with 0.2 blood alcohol. With Stephen, communication is difficult, he is obsessive compulsive and hides from those he doesn't know. It took Susan and Dave three years to finally figure out what he was trying to tell them. For example, when he tugged on his hear, it meant he had an earache. Before they realized that, they didn't know he had an earache until his ear bled. Because of his obsessive compulsiveness, Stephen can do things better than some, Dave said. When he was a child, Stephen would swing so high he would be level with the horizontal bar at the top of the swing set.

It can cost between $600,000 and $2 million to raise a child with FAS. "That alone should scare people," Dave said. With Stephen in particular, until the age of 12 he was sick a lot. He would throw up and have a fever, and the doctor could not figure out why. Finally one doctor did a heart echo and found Stephen had a hole in his heart and there was scar tissue between each chamber. "The surgeon said, 'I can't believe this kid's alive,'" Dave said. So, Stephen had heart surgery at the age of 12 and wasn't sick after that point. Shortly after he recovered from heart surgery, Stephen had surgery to place Harrington rods on his spine to correct his severe scoliosis. Both surgeries together cost more than $600,000.

Since he was in high school, Stephen and Dave have gone to schools and other functions to talk about FAS. Dave does most of the talking, but Stephen is included to show the affects of drinking alcohol while pregnant. "There's never a dry eye in the room," Dave said.

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