Shelby Ortman, who's now 11, was a baby when she was taken from her biological mother because of neglect and abuse. Shelby's mom drank alcohol when she was pregnant.
Shelby's adoptive mother, Leann Ortman, sits beside her in their Sioux Falls home as Shelby describes herself. "I'm kind of a slow thinker," says Shelby Ortman. "It takes time for me, and I kind of have to go through it slowly. Then I'll get it."
'WHY DO I DO THAT?'
Shelby gets it because she's told often that she can. Leann Ortman wasn't always sure her daughter would have the cognitive ability to learn.
"She raged a number of hours a day. We're not talking temper tantrums, we're talking restraining hold tantrums. She was completely out of control. It was sad, it was frightening and extremely disruptive," says Leann Ortman. "It broke my heart, but when she was done she would just look at me and ask, 'Why do I do that?'"
Shelby doesn't remember acting that way, and she sits next to her crying mother motionless and unmoved. She takes medication to keep her calm and focused.
Shelby doesn't have the striking facial features of fetal alcohol syndrome, the flat skin between the nose and mouth and the narrowly spaced eyes. Instead, the 11-year-old has problems learning and remembering. She often has trouble answering questions because she can't remember what she wants to say.
Shelby entered the foster care system as a baby. It was an open adoption, so Shelby has contact with her birth mother. Pre-natal alcohol exposure left Shelby with a learning disorder. Despite those challenges, Shelby is clear about how she feels about her birth mother.
"I don't think that she thinked (sic) about it, that it was going to hurt me. But it's sad, because I'm going to fight with this and it's going to be here as long as I live. It's really hard because she could have made the right choice," says Shelby Ortman.
ADOPTIVE PARENTS SOMETIMES IN THE DARK
The Ortmans understood the effects of fetal alcohol exposure when they adopted Shelby. Many adoptive parents don't. Yet 90 percent of the kids diagnosed on the spectrum of fetal alcohol disorders are in the foster care system.
Wendylee Raun trains prospective adopted parents for the Minnesota Adoption Support and Preservation. Raun says she could spend days on the topic of fetal alcohol spectrum disorders. But usually she doesn't.
"People typically never heard of it (FASD) or don't know anyone, but believe if they have to deal with it they'll just fix it. You can't fix it," says Raun.
Raun encourages parents to do their homework before they adopt a child.
"I'm not saying don't adopt these kids. I'm just saying, learn as much as you can and be prepared. Know this is a lifelong journey," says Raun.
Raun says it's important for couples to have support. Not every state has an adoptive parent advocacy group like Minnesota. Couples in South Dakota who want to adopt either go through an agency or a private attorney.
Sioux Falls attorney John Hughes works on adoptions. He says he typically sees couples who have been married more than five years and are having fertility problems. He says he asks hard questions before he's comfortable moving an adoption forward.
"We get right down to the gnat's eyebrow," says Hughes. "We ask if a couple will consider (a baby) if the birth mother was a prostitute or had other high-risk social behavior."
Hughes says even with the questions, there still are no guarantees when it comes to adopting a child.
FAMILY ADOPTED BASED ON FAITH
Carson and Shannon Walker used an agency for their international adoption. They wanted to have a larger family.
"We had a 5-year-old and a 2-year-old, and we were starting to get the baby bug," says Walker. "But I didn't really like being pregnant."
Shannon saw a flier for international adoption in her church bulletin, and they decided to adopt an infant from Russia. That was seven years ago. Plans to adopt a baby fell through, but the next day they received a package from the agency. It contained photos and a profile of another little girl.
"I'll never forget it. It came Airborne Express, (pictures of) this cute little dolly. Ludmila was her name," says Walker.
The pictures were of a 2-year-old with a large pink bow on her head, posing for the camera with a teddy bear. The picture painted in the medical report told another story. There might be damage to to her central nervous system. She might have been exposed to HIV.
Shannon says it read more like a medical journal.
"You would have thought from reading the report she would be laying on the ground not being able to do anything. Yet I looked at this healthy little girl in the pictures," says Walker.
The pictures are of a little girl who is now named Ellie. The Walkers say they made their decision to adopt Ellie based on faith -- faith in doctors who evaluated the lab and medical reports and pictures, and faith in their own instincts once they met Ellie and saw no signs of disabilities.
Last month Ellie, who is now 9, was diagnosed with prenatal alcohol exposure. She's small for her age, weighing 45 pounds. She's sometimes teased at school. She also has some of the facial features associated with fetal alcohol syndrome.
Thinking about it now, Shannon and Carson Walker say they knew of Ellie's history in Russia, but didn't make the connection.
"Looking back, I think that maybe it was told in an indirect way by giving information about the mom," says Shannon Walker. "The birth mom had no prenatal care, and the reason her parental rights were terminated was because she was giving drinking parties at her house."
What makes this diagnosis difficult for the Walkers is the fact they weren't prepared. They didn't think about fetal alcohol exposure as an issue.
Most parents don't, because it's not something that's easy to see. Most children who are exposed to alcohol during pregnancy have trouble with academics, aren't social and lack an understanding of cause and effect. Ellie is doing well in school, she has friends, she makes good choices.
'NOT MY CHILD'
Dr. Dana Johnson, a pediatrician at the University of Minnesota International Adoption Clinic, says prospective adoptive parents are given a lot of information.
"When going into adoption or childbearing in general, yes, you know children have birth defects, and bad things can happen in labor and delivery. If it's an international adoption, there could be unknown special needs or exposure to alcohol," says Johnson. "But in general people tend to think, 'Not my child, my child will be OK.'"
The 2000 Census reported nearly 200,000 children whose journey to the U.S. started with an international adoption. A majority of those kids are born in countries with high rates of alcoholism. In Minnesota, about 15 percent of all adoptions are children from other countries.
Pediatrician Dana Johnson says with an increase in international adoptions, there's also an increase in children diagnosed with fetal alcohol syndrome. At his clinic, 85 percent of the children diagnosed with FASD were born in Russia.
Johnson says children adopted from eastern European countries are more likely to have been exposed to alcohol. But it's difficult to get any hard statistics because few of these kids receive an official diagnosis.
Diagnosing kids who were exposed to alcohol is a daylong process involving physicians, psychologists, therapists, teachers and social workers. Only a handful of children go through a clinic each month.
Dr. Laura Davis Keppen, a geneticist and endocrinologist at Sanford Health in Sioux Falls, says some children are easy to diagnose because they have the recognizable facial features -- a small head, eyes that are close together and flat skin in the area between the nose and mouth.
Keppen says a baby with brain damage is not easy to identify.
"For example, the facial features we can see with fetal alcohol syndrome are dependent on alcohol intake in the first trimester," says Keppen, "because that's when all your facial features are developing. Brain growth happens in the second and third trimesters."
The Walkers' daughter, Ellie, has not been through a diagnostic clinic. For now, the Walkers are trying to learn about FASD. And for now, they're relying on the same faith they had when they adopted Ellie. A formal diagnosis doesn't matter to Shannon Walker.
"I don't really care to know, just because I feel like there's no difference," says Walker. "I haven't noticed any differences, and if we get into puberty we get into issues we find we need help with her, I wouldn't be opposed to really screening her."
Every child exposed to alcohol before birth has a different story to tell. Their symptoms and development are unique.
But once there's a diagnosis, for families the path is very consistent. Parents say they must learn how to become an expert advocate for their children, and follow that role where ever it takes them.
Your support matters.
You make MPR News possible. Individual donations are behind the clarity in coverage from our reporters across the state, stories that connect us, and conversations that provide perspectives. Help ensure MPR remains a resource that brings Minnesotans together.