‘He looks so normal’: When it comes to FASDs, there’s no such thing as predictability

Part 1 of 3

SPONSORED: Plenty of parents argue with their teenagers about chores, schoolwork, and video games. Megan is one of them. Like other parents, the Kenai Peninsula mom sometimes clashes with her oldest son over video games, arguing with his siblings, and putting away his laundry.

But at Megan’s house, there’s more than just teen angst at work. She sometimes watches her son get abusive and out of control. She sees him struggle to communicate. She braces herself for outbursts.

And she knows it’s not his fault.

Megan parents one of the unknown number of Alaska children who experience what’s known as a fetal alcohol spectrum disorder, or FASD. (Her last name, along with her son’s name, has been withheld to protect his privacy.)

“Some days are fine,” she said. “Others are a disaster.”

‘We thought he would be fine’

As a young married couple, Megan and her husband had trouble conceiving children and turned to adoption. When their son was born, healthy and thriving, they knew that he had been exposed to alcohol early in pregnancy, but that didn’t seem like much cause for concern.

“Not knowing anything about FASD, we thought he would be fine,” Megan said.

But as their baby grew into a toddler and then a preschooler, Megan and her husband started to notice developmental delays. At age 3, he could say only three words: Mama, Dada, and uh-oh. By age 10, he was falling behind in reading and couldn’t write a sentence unassisted. Doctors prescribed medication to help manage his angry outbursts, but it caused unhealthy weight gain. When he was 13, his parents sought an official developmental disability certification from the state and a Medicaid waiver to help pay for his care. They’re still waiting for test results that will determine his eligibility.

In between, there’s been intensive needs preschool, individualized education programs (known as IEPs), speech therapy, and multiple diagnoses -- static encephalopathy, ADHD, intermittent explosive disorder, and FASD -- accompanied by multiple rounds of psychological evaluation that his parents have had to fund out of pocket to the tune of $4,000 to $5,000 each time.

“Because he has never had Medicaid to help and these evaluations are not usually covered under insurance, we have to pay,” Megan explained.

Despite his challenges, however, you might have a hard time picking him out in a group of other kids.

“I hear all the time, ‘He’s such a sweet kid,’” Megan said. “And he is, sometimes. ‘He’s so smart.’ And he is, at some things. I also hear ‘He looks so normal.’ Yes, he does, and the sad fact is he will never live independently.”

A spectrum of challenges

Megan’s story is not unique. Experts estimate that as many as 1 in 20 U.S. children are affected by fetal alcohol exposure -- and in Alaska, that number may be twice as high.

That doesn’t mean 1 in 20 kids has fetal alcohol syndrome, or FAS, with its characteristic facial features and severe developmental and physical disabilities. As the clinical understanding of alcohol’s effects on pregnancy has advanced, researchers have learned that damage from alcohol isn’t all-or-nothing. Like autism spectrum disorders, FASDs can be severe, mild, or anywhere in between.

“The full spectrum of FASD can manifest as FAS,” said Marilyn Pierce-Bulger, an Anchorage nurse practitioner who specializes in diagnosing FASD. “And then there’s a range of impacts that are graduated that are completely unpredictable.”

At one end of the FASD spectrum are babies born with severe, immediately apparent disabilities. At the other are infants who appear perfectly healthy but who will begin to exhibit behavioral and cognitive challenges as they grow older. In fact, Pierce-Bulger said, about 95 percent of people who have “brain-based differences” due to alcohol exposure in the womb don’t exhibit any external symptoms other than those that show up as behavior problems, attention deficits or learning disabilities. Many of them will never be diagnosed with FASD.

“They’re in the behavior system,” she said. “They’re in the justice system. They are on our streets.”

Children with a diagnosis of static encephalopathy -- like Megan’s son -- fall more toward the severely impacted end of the spectrum, Pierce-Bulger said. They don’t have the physical symptoms of FAS, but they experience the neural impact.

Put simply, she said, “It’s a brain that got built different.”

The science of teratogens

While much is now known about alcohol and its impact on a developing fetus, there’s more to learn. What researchers know for sure is that alcohol is a teratogen -- an agent that causes birth defects. The science of teratology is constantly evolving, and as it changes, so does what’s known about alcohol and pregnancy.

“Back when I got into the field in the 1980s, and the term ‘FAS’ had only been coined in 1973, it was not uncommon for some obstetricians to deem a little bit of alcohol safe or utilize an alcohol infusion to delay premature labor,” said Susan Astley Hemingway, a professor of epidemiology and pediatrics at the University of Washington and director of the Washington State FAS Diagnostic and Prevention Network. “We know better now, and these practices are no longer supported.”

The idea that alcohol isn’t too bad as long as it’s just a little here and there seems reasonable enough -- until you learn more about alcohol’s teratogenic nature. Some teratogens can only cause damage during a specific window of time. Thalidomide, for example, which infamously caused birth defects in thousands of babies in the 1950s and ’60s, is known to be harmful only when taken during a 16-day period very early in pregnancy.

Alcohol, on the other hand, has the potential to cause different kinds of damage during every stage of pregnancy. The distinctive FAS facial features appear to form only if there’s alcohol exposure during the third or fourth week of pregnancy, Astley Hemingway explained. During other periods of time, alcohol may affect the palate, teeth, heart, limbs, even the genitals. Most critically, damage to the central nervous system -- the brain and spinal cord -- is possible at any point during pregnancy.

“The damage caused by alcohol is highly variable from one pregnancy to the next. This is likely explained, in part, by the highly variable exposure patterns. Nine months is a long period of time. Thus, it is very unlikely any two pregnancies have identical exposures day-to-day,” Astley Hemingway said. “It’s why no two kids are equally damaged.” But recent research has now revealed that the magnitude of damage doesn’t just depend on the level and timing of alcohol exposure.

Earlier this year, Astley Hemingway co-authored a study of twins with prenatal alcohol exposure. The unique advantage of the twin study is that, in each twin pair, both fetuses were exposed to identical levels of alcohol day by day. Identical twins (with identical DNA) had identical FASD outcomes. Non-identical twins (who share only 50 percent of their DNA) had different FASD outcomes despite identical exposures.

The problem with giving the green light to drinking based on when, how much or what a pregnant person drinks, Astley Hemingway said, is that it assumes all fetuses are equally vulnerable to the effects of alcohol.

“That implies that a glass of wine has the same impact on all fetuses,” she said. “It’s not just the amount. Fetal genetics plays a role. Some fetuses, genetically, are more vulnerable to the alcohol effects than others for reasons we do not fully understand yet.”

‘I didn’t know what I didn’t know’

At Megan’s house, the days are unpredictable. Her son’s lack of executive function means he can’t do chores without help. He has sensory issues with food, and getting him to eat a healthy diet is challenging. Disagreements with his siblings can spark scary, violent outbursts, so constant parental supervision is a must. They had to get rid of the video game console after he got angry and struck Megan with a controller.

“When your child is smaller and having a meltdown, it’s easy to scoop them up and hold them tight and soothe their feelings,” Megan said. “We now have a 225-pound 14-year-old who still rages like a 2-year-old sometimes.”

It’s frustrating -- and, she’s quick to emphasize, it’s not his fault. He experiences a disability, and it doesn’t change how much his parents love him or define who he is.

“There are things he excels at, such as art and lawn care,” Megan said. “We try to build on those strengths and emphasize the positive.”

And she talks openly about FASD, both to her son (“We will often say something like, ‘This is hard for you because of the way your brain works”) and to other people. Megan said she’s amazed at how many people aren’t familiar with the FASD spectrum -- but then again, she used to be one of them.

“Why should I be shocked?” she said. “I didn’t know what I didn’t know until I had to learn.”

Read Part 2: In search of a better conversation about alcohol and pregnancy

Read Part 3: Living with FASD: ‘I’m going to have this for the rest of my life’

It is never too late to stop drinking. Because brain growth takes place throughout pregnancy, the sooner you stop drinking the safer it will be for you and your baby. If you’ve been drinking while pregnant, stop immediately and talk to your medical provider. If you are unable to stop, your medical provider can refer you to resources for help. This series is sponsored by LetsTalkFASDak, an FASD prevention initiative of the State of Alaska administered through the Alaska Mental Health Trust Authority. Learn more about alcohol, pregnancy, and what you can do to take charge of your health at LetsTalkFASDak.org.

This story was produced by the creative services department of the Anchorage Daily News in collaboration with LetsTalkFASDak. The ADN newsroom was not involved in its production.