Terry Trujillo’s family has been facing an ordeal that would be familiar to a surprising number of Americans. Holding back tears, she remembers the moment she had to explain to her adopted nephew that his severe learning disabilities, memory problems and behavior issues were the result of Fetal Alcohol Syndrome.
“The little boy would say ‘Well what’s that, what do you mean?’ And it’s hard to sit there and tell a child it means that your mother drank alcohol while you were in her stomach, and to see their face. Because they know it’s wrong,” Trujillo said.
Trujillo is raising five of her sister’s young children. They’ve been living at her home near their native Laguna Pueblo since their mother went to jail over drug and alcohol charges seven years ago.
“Social services came and gave them to me with no warnings, no help—just ‘here are the kids, they need to be raised.’ That was all that was provided for us,” she said.
Trujillo knew her sister had a long history of alcoholism. But at the time she took in the kids, she didn’t know those drinking problems had caused permanent neurological damage to three of them. Finding that out, Trujillo says, was a long and confusing process that started when the kids went to school.
“There were behavior issues like hitting and biting, and just stuff that children didn’t do at school on an everyday basis," Trujillo said. "I didn’t know how to handle them. Spankings didn’t work. I was just at my wit’s end, I didn’t know what to do.”
Teachers and school administrators tried to discipline the kids for acting out in class, but that just made things worse. Doctors diagnosed them with depression and post traumatic stress disorder, but the medications weren’t working.
“And I knew something was wrong and I knew they had to have help, but there’s no resources here in our native communities,” Trujillo said.
Fetal Alcohol Syndrome, also called FAS or FASD, is a global public health problem that cuts across racial, ethnic and economic lines. It can cause facial and organ deformations in extreme cases, though the vast majority of people with FAS suffer from behavioral and learning problems. The most recent federal data shows two out of every one thousand babies born in the U.S. are born with FAS, and researchers say the actual number is much higher.
But many families have a hard time tying their kids' problems to prenatal alcohol exposure, and even though FAS is a condition that’s been around for many thousands of years, it wasn’t until the 1970's that doctors identified it as a unique medical condition. And experts are just beginning to understand how FAS works.
“The biggest problem is being able to identify FASD as its own disorder, and understanding what the cause of developmental delays is,” said Julia Stephen, a neuroscientist at UNM’s Mind Research Network. She’s part of a team of New Mexico doctors working with a grant from the National Institutes of Health to try and unravel some of the many mysteries surrounding FAS.
She says right now doctors have to be able to prove the mother was drinking while pregnant to tie the many potential problems a fetus can experience to alcohol exposure in the womb.
But that can be hard to do. Lots of kids with FAS are being raised in the foster system where the mother’s identity and drinking history are often unknown. Even when doctors do know who the mother is, they have to wade through fear, guilt, and deep social stigmas that can keep moms from being forthright about their drinking habits
Lou Kodi is a child clinical psychologist at UNM who specializes in diagnosing alcohol-related developmental disorders.
"What happens when a mother comes in is they’ll acknowledge using methamphetamine, or cocaine or marijuana — they absolutely deny using alcohol," Kodi said. "And it’s primarily because our culture has done a good job of educating that alcohol causes problems for the fetus, but we haven’t done a good job of changing the mother’s behavior, which is the critical part.”
Kodi says alcohol is one of the most damaging substances out there for a developing fetus, worse even than hard drugs like heroin and methamphetamine. And the consequences are permanent — less than half of kids diagnosed with FAS will be able to live independently in the long term.
Terry Trujillo says she knows her sister didn’t understand the damage she was causing her children by drinking while pregnant. Still, she’s had to struggle with the fact that the kids’ conditions could have been prevented.
“You have to mourn the loss of that healthy child, and you have to realize that it’s brain damage and it’s never going away," she said.
But things have come a long way for Trujillo and her nieces and nephews. Because she got a diagnosis early, she was able to get the kids into specialized learning and behavioral treatments at a young age. Those treatments have completely turned things around for the family.
“They’re just… they’re happy," Trujillo said. "They run around outside, smiling and laughing. It’s great seeing them really flourish in their education and their behavior, and knowing that one day they’re gonna succeed.”
The kids’ performance at school is better today than it ever has been. They’re reading, catching up with math, and this year Trujillo’s youngest niece Xannette tested out of her special education classes.