From the October 2018 issue

Michigan Family Adopts Child With Fetal Alcohol Spectrum Disorder

About 40,000 infants are born with fetal alcohol spectrum disorder each year. A Farmington Hills family shares how they help their daughter thrive and why greater awareness is needed.

Fetal alcohol spectrum disorder

Bringing a child into their family from the Ukraine meant Michigan natives Kari Jo Bank Wagner and Forrest Wagner wouldn’t know much about their new addition until adoption time arrived.

Due to the country’s blind adoption policy, the child’s identity couldn’t be revealed ahead of time. All they knew is that they wanted a child under age 4 with mild special needs. At this point, any thought of fetal alcohol spectrum disorder, or FASD, was far away. The couple waited.

“Then one day they said, ‘OK, it’s your turn, come on over,'” Kari says.

So she and her husband flew to Ukraine from their Chicago home, not knowing what to expect. After they arrived, they were presented with a photo of a young girl along with paperwork. That’s where translators found something of concern: Her birth mother had been an alcoholic. That put the girl, Alina, at risk for fetal alcohol spectrum disorder.

What is FASD?

The National Organization on Fetal Alcohol Syndrome describes FASD as an umbrella term for a group of mental, physical, learning and behavioral disabilities “that can occur in an individual prenatally exposed to alcohol.”

The organization notes that FASD affects an estimated 40,000 infants each year – more than spina bifida, Down syndrome and muscular dystrophy combined.

Fetal alcohol syndrome, or FAS, is part of the spectrum of disorders, says Dr. Sanjay Chawla, a neonatal specialist with Children’s Hospital of Michigan.

“It’s difficult to know the true prevalence,” he says, but it’s estimated that 2 to 5 percent of all children are affected by FASD. FAS is less common – for every 1,000 children, 6 to 9 are affected, he adds.

Bonding time

Even though they didn’t know much about fetal alcohol spectrum disorder, the discovery didn’t deter Kari, who taught special education, or Forrest.

“We went to the orphanage for a visit and, at 2 years and 9 months old, she was all heart.” It didn’t seem to matter that Alina was nonverbal. “She could understand everything they (asked) her in Russian. And she could do it all,” including tying her shoes. “She just wasn’t speaking back.”

Though Forrest made a return visit to the U.S. for work, Kari stayed in Ukraine for six weeks, bonding with Alina through daily visits to the orphanage and finalizing the adoption paperwork while securing a Visa and Ukrainian passport for Alina.

“We flew over in February and came home on April 1. I could have gone back to Chicago (and later returned) but didn’t want to leave her,” Kari says.

Forming a relationship with Alina during those six weeks – aided by Kari’s driver, who played with Alina during their visits, and an adoption coordinator who sang songs to her in Russian – “made the transition easier on Alina.”

Yet the fetal alcohol spectrum disorder was a consideration. Before they left for home, they consulted an adoption doctor back in Chicago. Though it wasn’t an official diagnosis, he confirmed that Alina had the hallmarks of FAS.

“The facial features aren’t always obvious, but if you know what you are looking for, you can tell,” Kari says. Other than that, “there were no signs behaviorally other than the speech delay.

“Once we got her home to Chicago,” she continues, “she started picking up words pretty quickly. Within weeks, she could say ‘wah-wah’ for water … then came ‘mama’ and ‘papa.’ We didn’t see any disruptive behavior for a while.”

Back to Michigan

After adopting Alina, Kari found out she was pregnant with their son, Christopher. The news sealed their decision to move back to Michigan to be near family. They settled in Farmington Hills, where they enrolled Alina in Alameda Early Childhood Center.

“The amazing thing about Alina is she loves school and would go seven days a week if she could. Any behavior issues we see are at home,” Kari explains. “Like a lot of special ed kids, (she’s able to) hold everything together at school but it takes a lot of effort and energy.”

Alina turned 5 in May of 2018. As of the fall, she attends a morning general education class for 4-year-olds and is repeating a special education class for 4-year-olds in the afternoon. She also receives speech and occupational therapy outside of school.

“She has made so much progress since starting pre-K – writing her name, counting to 20 and learning the days of the week,” Kari says. “I am incredibly grateful for her teachers and all they do and feel so fortunate that she is getting such comprehensive support in preschool.”

Alina’s progress supports a notion expressed by Chawla.

“There are certain factors that mitigate the adverse effects” of prenatal alcohol exposure, he says, “including early diagnosis, the presence of a loving and caring environment, access to therapies (such as) speech and occupational therapy and (when appropriate) the use of medication.”

Outcomes

Charisse Cossu-Kowalski, president of MCFARES – the Michigan Coalition for Fetal Alcohol Resources, Education and Support – explains that there are “a wide range of outcomes” with FASD.

It often depends on when the mother drank during pregnancy and for how long. “That’s why we beg for early diagnosis and intervention and education for everyone involved in that child’s life,” she says.

At each stage of pregnancy, different organs develop.

“If (a mother drinks) while the eyes are developing, (the child) may have eye issues. Some of our kids (in the FASD community) have hearing problems. … Some of our kids can’t hold a pencil until they are 10. Math is especially difficult for most of our kids,” Cossu-Kowalski says. “Some have average to superior IQs. The range of challenges is massive.”

Since nearly half of all pregnancies in the U.S. are unplanned, Chawla adds, “a woman might not know she’s pregnant for four to six weeks.”

But the distinguishing facial features – a flat surface above the lip, short distance between the inner and outer corner of the eyes, a thin upper lip, for example – “are most likely to occur if the baby is exposed to alcohol during that early window in pregnancy,” Cossu-Kowalski adds.

“It’s a hard thing to both educate and not condemn, because there is only one cause. But we do not want to place blame. The child is here. Let’s see what we can do to support this child and this family.”

Useful information

MCFARES aims to help teachers understand the reason behind behaviors associated with fetal alcohol spectrum disorder – the kind of information Cossu-Kowalski wishes was available when she and her husband adopted two boys from Russia more than 20 years ago.

Even though background information was scant, they had reason to believe the birth mothers drank during pregnancy.

“When they were younger (and experiencing developmental delays), there was no recognition of FASD, not in the schools,” she says, adding that fetal alcohol spectrum disorder is sometimes misdiagnosed as autism or ADHD. “My goal has been to raise awareness and develop supports for families.”

Chawla explains that health care practitioners are often aware – but they can do a better job implementing the “known preventative strategies to reduce FASD.”

One thing is certain: While not every child exposed to prenatal alcohol will develop FASD, “the only way to prevent it is to not drink during pregnancy,” he says.

Overcoming stigma

When either Kari or Cossu-Kowalski tell outsiders they have children with fetal alcohol issues, they don’t distinguish their adopted children from their biological children.

“They’re both my kids,” Kari says of Christopher and Alina. “Some people want to judge, but not everyone needs to know she’s adopted. To me, it’s more important they understand what she needs because of the FASD.”

“There are way too many people who want to blame,” adds Cossu-Kowalski, acknowledging the stigma for biological families. “Our sons did nothing wrong; their (birth) mothers did nothing wrong,” she says. They just “did not know the dangers” of drinking during pregnancy.

Spreading awareness

Kari’s experience inspired her to start a nonprofit, Friends of FASD, to help spread awareness and understanding of children with fetal alcohol issues.

It’s important to Kari that Alina is seen as a “normal” kid even if she struggles to control her emotions due to fetal alcohol’s long-lasting effects. “She likes typical kid things – coloring, playing outdoors, swimming, somersaulting … and she loves cats but we have a dog,” Kari chuckles.

When it comes to her spirit, Alina hasn’t changed since the day they first met. “She’s still all heart and so enthusiastic.”

Photo by Lauren Jeziorski

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