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Fetal Alcohol Syndrome is difficult to talk about because children with this medical condition are born with a form of brain damage that effects them for life because their mother drank, often before she even knew she was pregnant.
If women engage in binge drinking during the first three months of a pregnancy — having six beers or the equivalent two days in a row —the alcohol could do serious damage to the brain of their unborn child, said Dr. Sterling Clarren, director of Canada’s Fetal Alcohol Spectrum Disorder Research Network.
The American Academy of Pediatrics has declared April as Alcohol Awareness Month and Dr. Clarren, who has studied this issue for more than 40 years, said there is no recreational drug that is as bad as alcohol because it passes freely through the placenta to the baby.
“It’s just an amazing little molecule. Most of the street-drug molecules are much bigger and have less potential to harm babies,” Dr. Clarren said.
Dr. Clarren was in Toledo recently to talk with social-service providers at an event sponsored by DoubleARC, a local agency that helps families with children who have Fetal Alcohol Spectrum Disorder or FASD.
Dr. Clarren and DoubleARC are hoping to raise awareness in Toledo because they believe it is a grave problem that is misunderstood and goes undetected by many counselors, teachers, medical professionals, and parents.
The best data indicate that potentially 1 in 30 people in the United States has brain damage associated with alcohol exposure during pregnancy.
“That [is] a huge epidemic. It should be way ahead of heart disease and cancer. This is a big deal,” Dr. Clarren said.
He calls the disorder mostly invisible because people with this kind of brain damage can look fine. It manifests primarily as behavior problems and “leads to subtle problems in memory, in functioning, in language, and a whole host of process issues,” he said.
He said children with the disease often begin to act out in primary school and are thought to be children with behavioral issues, or sometimes they are diagnosed with attention deficit disorder or some other problem, but rarely are they tested for FASD.
“It takes us forever to think maybe there is a problem with the brain. That’s just not where our society goes first,” Dr. Clarren said.
It’s very complex and confusing, and there is a tendency to blame and shame the mothers rather than helping them, he said.
“Women drink in pregnancy for other reasons because of addiction and mental health problems, for social issues. I mean, a range of issues, but they don’t drink to harm their baby,” Dr. Clarren said.
If fact, he said most find that it’s wrenching for them for rest of their lives.
Rugena Modisett’s voice was full of angst as she recounted the dark days of her drug addiction. She said she was not the occasional binge drinker who found out later she was pregnant.
The 49-year-old Toledo mother has three children who are all suffering from FASD because she drank while pregnant.
It was a long time ago, but the memories still cut deep. Her emotional retelling of her story was filled with tears of regret as she thought about her children, and how even now, 16 years after she stopped drinking, their lives will always be more difficult because they suffer in varying degrees from this disorder.
“I’m not saying if someone would have said, ‘Rugena, what you doing, drinking and smoking while you are pregnant’? that I would have said ‘oh, it’s gonna affect my unborn child, maybe I should stop.’ I don’t know if my mind was in the right place. I was out there for a long time before I got pregnant,” Ms. Modisett said.
But she did finally get tired — tired of getting high, tired of spending all her money on drugs and alcohol, “and then sitting and looking at the kids crying because they’re hungry,” she said.
She left Ypsilanti, Mich., and moved to Toledo in 1997 to start anew. She got help for her addiction but the signs were becoming clear that her oldest child, her son, was in trouble.
He was kicked out of three day-care centers. He “was [an] unhappy child, and he couldn’t say that he needed help. All he knew was to cry and scream,” she said.
Eventually, she connected with DoubleArc, and all three of her children were tested. She found that her son and two daughters all had brain damage, but her son’s was the most severe. He has a cyst on his left frontal lobe that caused his seizures, she said.
“I did this to them. You know, not intentionally, but not knowing the outcome, and so I just cried to my kids, and I told them that I would always do what I can.”
She said she became an super-dedicated mother. She met with teachers and counselors, explaining the disorder to the professionals. She was ever present at school trying to guard her kids from the teasing, taunting, and the name-calling they suffered at the hands of other children because they were a little slower.
Through her pushing and prodding, her children all graduated from high school. Her two daughters are in college, and her oldest son was just hired by a major transportation company.
Helping, not blaming
Dr. Clarren said Ms. Modisett is not typical. He said most kids with FASD are taken from their birth mothers and put up for adoption, and the adoptive parents eventually seek help for the disorder.
A lot of people are in the “shame-and-blame” game. “We are in the helping game — helping the mom and the children,” said Janet Bosserman, executive diretor of DoubleArc.
The typical woman who has a child with FASD has a 50 percent chance of having FASD herself. These are people who already have brain damage, said Dr. Clarren.
Ms. Modisett has turned her life around. She has a degree in social work and is now an advocate for FASD. She wants other women to know that this is real and drinking can harm their fetus.
“I accomplished stuff, but it won’t change what I’ve done to my kids,” she said. “They have got to live with this all of their life. It’s not something they are gonna grow out of.”
Contact Marlene Harris-Taylor at: firstname.lastname@example.org or 419-724-6091.