MACHIASPORT, Maine — The U.S. Centers for Disease Control and Prevention say there is no safe amount of alcohol that can be consumed during pregnancy. Exposure can put an unborn child at risk for Fetal Alcohol Spectrum Disorders, or FASD.
Thousands of cases in Maine with FASD are not being identified early enough because of stigma and lack of awareness, experts say.
The CDC's website says it's not known how many people have fetal alcohol spectrum disorders. Studies show it's possible 40,000 babies are born with FASD every year. As many as 80% of children living in foster care could be affected as well.
Paula and Tony Maker already had five children when Aidan came into their lives at just six months old. The couple began fostering him, eventually adopting him at 2 1/2. Despite the fact that Aidan's biological mom admitted to drinking alcohol very early in his pregnancy, wellness checkups showed Aidan was developing normally.
"The caseworker and doctor said yes, his mom did drink, but he is hitting all his milestones, so it won't probably be an issue," Paula said.
But as Aidan got older there were red flags no one could explain. He would cry uncontrollably and couldn't self-soothe. Aidan also had explosive fits of anger and behavioral problems.
"When he is overwhelmed, and he rages, and anger and all of that, that is the hardest thing to deal with," Paula Maker said.
After a dental procedure, Paula Maker stumbled across birth records flagging Aidan to be at risk for Fetal Alcohol Spectrum Disorders. FASD is an umbrella term for a range of conditions that affect children whose mothers consumed alcohol during pregnancy. Aidan was nearly four when he was diagnosed. While Paula Maker is grateful to get answers, she remains frustrated the condition wasn't on anyone's radar.
"They are not informed to know what FASD is. It's brain damage before they were born that you cannot reverse," Paula Maker said.
Dr. Henry Skinner is a psychiatrist with Tri-Country Mental Health Services. He treats children and adults with FASD.
"These kids are five% of the population. That's a lot of kids. It's as common as asthma," Skinner said.
Skinner added that babies are at risk when mothers drink at any time during their pregnancy because even the smallest amount of alcohol kills brain cells.
FASD symptoms include learning disabilities, speech delays, aggression, poor social skills, anxiety, memory problems, and poor concentration and reasoning.
"It is much more toxic than cocaine or meth or any of the opioids. There isn't the lasting damage from brain malformation that we see with alcohol," Skinner advised.
Often called an invisible disability, experts believe tens of thousands of children and adults with FASD are never diagnosed or are misdiagnosed. Urine toxicology tests can determine if a baby is born with drugs in its system, but it doesn't screen for alcohol.
The neurological condition was first identified as Fetal Alcohol Syndrome nearly 50 years ago. It was a diagnosis that required distinct signs and symptoms including abnormal facial features.
"They ruled that out at one year old," said Karen Westerman. The biological mother of Gary and Karen Westerman's adopted son drank alcohol while pregnant, but the condition went undetected. Born in 1981, their son didn't have the recognizable facial features, which experts now say only show up in 10% of all cases. He also hit his milestones, but issues started in first grade.
"It was very difficult to manage him in a classroom. He was disruptive," Karen Westerman said.
Despite dealing with learning disabilities, ADHD, depression, and bipolar disorder, their son was intelligent and even won the Governor's Award for English and writing. As a teenager, he struggled with substance use disorder and problems with law enforcement. The couple believes their son and many others are falling through the cracks because of the lack of awareness of FASD.
"Our teachers should know about this. Our justice system should know about this. So many people who are incarcerated have FASD," Gary Westerman said.
Even though FASD is 100% preventable, the stigma of substance use disorder makes it harder for moms to reach out for help. Also, some moms consume alcohol before they know they are pregnant.
Dr. Douglas Waite is a developmental pediatrician who runs an FASD clinic in New York City and is an assistant clinical professor of pediatrics at Mount Sinai Hospital.
"There is a strong risk that if you say, 'I am drinking during pregnancy,' some people may say we better call Child Protection," Waite said.
Waite has also developed training programs for the American Academy of Pediatrics to flag potential symptoms.
Federal legislation called the FASD Respect Act is pending in Congress. The bill is co-sponsored by Sen. Susan Collins, R-Maine. If passed, it will help build systems of care for the early diagnosis of FASD in Maine and across the country. That way, affected children can get early intervention.
"It's really an invisible disability. It's an epidemic that is hiding in plain sight, and people are suffering," Connie Mazelsky, cofounder of FASD Maine, said.
The nonprofit works to increase awareness and prevention of FASD through the education of families, providers, educators, and community stakeholders. It also provides resources to make services and support accessible to those individuals and families affected by FASD.
Mazelsky spent years advocating and searching for the correct diagnosis for her daughter, who was adopted. Her daughter was finally diagnosed with FASD after seeing experts in Boston.
Back Down East, Paula Maker is homeschooling Aidan to give him the one-on-one attention he needs.
But getting early invention services is challenging. The closest specialists are nearly two hours away in Bangor. Aidan also can't tolerate long car rides, but his mom is determined to help him get on the right path.
NEWS CENTER Maine reached out to the Maine Department of Health and Human Services to find out about intervention and screenings for FASD for foster children. Spokeswoman Jackie Farwell said in a statement:
"The Department relies on the expertise of medical professionals to diagnose FASD and other conditions in children in foster care. There can be challenges in diagnosing this condition, including at birth, as part of a substance-exposed infant report/investigation. At birth, a reported history of alcohol use during pregnancy can be an indicator of FASD, although most markers are primarily exhibited later in a child’s development.
"When children enter foster care, the Department is required to ensure that youth in care receive a medical examination by a physician or nurse practitioner within 10 working days after the Department’s custody of a child commences. In addition, if the physician or nurse practitioner determines that a psychological assessment of the child is appropriate, the Department ensures an appointment is obtained within 30 days of the physical examination. The Department also encourages youth to be seen for a comprehensive medical, behavioral, and developmental evaluation at one of the three clinics throughout the state, Edmund Irving, Penobscot Community Health Center, and Spurwink. All of these pathways provide an opportunity for conditions such as FASD to be identified. Any known birth and family medical history is provided to professionals conducting these exams to ensure a complete assessment for youth in care.
"Additionally, Maine CDC gathers information from sources such as the Pregnancy Risk Assessment Monitoring System, or PRAMS, which tracks self-reported rates of behaviors such as substance use among mothers who have recently given birth. PRAMS asks questions regarding mothers’ alcohol habits during, as well as, just prior to pregnancy. In addition, we track rates of substance use among women of childbearing age through self-reported data sets such as the Behavioral Risk Factor Surveillance System and the National Survey on Drug Use and Health."