The Littlest Victims: Fetal Alcohol Syndrome

Fetal alcohol syndrome is a growing crisis in New Jersey. Here’s how the state is fighting back against this totally preventable disorder.

Illustration by Vivienne Flesher

Denise Harris was trying for years to have a baby. But when her marriage started to crumble, she was in denial that she was pregnant despite showing signs. Two at-home pregnancy tests displayed positive results, yet she wanted confirmation from her gynecologist, who didn’t have an available appointment for the next two months. In the meantime, she would drink.

Her son was born not long after, five months premature. When he finally came home from the hospital he needed occupational and physical therapy from the onset due to brain damage and developmental disabilities. Now at age 14, he reads at a second-grade level.

Harris’s son has been diagnosed with autism, ADHD and fetal alcohol spectrum disorders (FASD)—caused by physical and mental damage all believed to be caused by alcohol exposure in the womb. Although its symptoms overlap with the other conditions, FASD can also cause behavioral issues, including aggressiveness, antisocial tendencies and impulsiveness. The child’s emotional development can be well below chronological age. Medical experts agree the disorder is 100 percent preventable by abstaining from alcohol during pregnancy.

“I caused this,” says Harris (whose name has been changed to protect her privacy). “I didn’t know he was in there. And when I found out he was, I couldn’t stop drinking. I didn’t know how much harm I caused the baby.” Harris admits that she didn’t understand what an alcoholic was at the time. She was “functioning” after all, holding a job and handling her household chores. (She and her husband separated during her pregnancy.) Now sober for nearly a decade, she has her son to thank. “I need my son as much as he needs me because I have trauma too.”

Harris, of Somerset County, shares her story because many women don’t realize the affects alcohol can have while pregnant. The American Academy of Pediatrics issued guidelines last year stating that no amount of alcohol should be considered safe during pregnancy. The academy adds that the odds of a child developing FASD increases by 12 times when a mother drinks during the first trimester, compared to not drinking at all. In New Jersey, the Substance Abuse Monitoring System—part of the state Division of Mental Health and Addiction Services—says 21.6 percent of pregnant women reported alcohol use in 2015, compared to 18 percent nationwide. The Jersey figure is up from 18.1 percent in 2011-2012. In fact, prenatal exposure to alcohol is the leading cause of birth defects in New Jersey and the nation. An estimated 40,000 babies are born each year with FASD.

Despite popular belief, even “social drinking” can cause harm to an unborn child. “There are mixed messages out there that it’s okay to have a glass of wine occasionally while pregnant,” says Barbara May, chair of the New Jersey Fetal Alcohol Spectrum Disorder Task Force. “The problem is how big is your glass of wine, and how often is occasionally?”

The task force—overseen by the Department of Health’s Office for Prevention of Developmental Disabilities and administered by the Governor’s Council—is made up of 25 volunteers, including medical professionals, dieticians, midwives and occupational therapists. Their message: It’s not okay to drink while pregnant. Projects this year include a campaign to put messaging on coasters to avoid alcohol if you plan to be or think you are pregnant. It was to be rolled out in September at participating bars. “This might make them think twice,” May says. “Friends, family members, partners would also be aware of the message.”

May, who is a nurse and director of prevention programs at the Southern New Jersey Perinatal Cooperative, says the current screening method for alcohol use among pregnant women is flawed. Right now, doctors ask: “Are you drinking?” Women can just say no, May says. Instead, she is proposing the 4P’s Plus screening method, which she describes as a more sensitive approach. It would start by asking the mother’s habits prior to conceiving and how often she would consume alcohol, into whether she drank before she found out she was pregnant. At that point, the expectant mother may be more open to talking about her current habits as well, May says.

According to a recent report from the Centers for Disease Control and Prevention, an estimated 3.3 million women who drink are sexually active but not on birth control. And three of four women who want to get pregnant don’t stop drinking when they stop using birth control. Many women don’t know in the first four to six months that they are in fact pregnant.

“It’s rare to find a mother who will own up to her own consumption,” Dr. Uday Mehta, co-chair of the task force and an associate professor of pediatrics at Robert Wood Johnson Medical School and medical director at Children’s Specialized Hospital. However, he adds, “the sooner the diagnosis is made, the earlier the treatments begin and the better the outcome.”

When Harris brought in her son to see Mehta in 2011, she was prepared to be honest with him; she told him that she drank while pregnant. Mehta pulled out an image of a boy that looked similar to her son; the facial features signify FASD. They include olive shaped eyes that are relatively far apart, a shorter nose, and a thin upper lip and philtrum (the vertical groove in the middle of the upper lip). To Harris’s surprise, the chart looked similar to her too. “That’s because your mother drank when she was pregnant with you,” Mehta told Harris. “That explained everything,” says Harris. “The cycle stops here.”

Despite obvious physical features, it can still be difficult to diagnose FASD. For one, the facial features simply could be hereditary and unrelated to any disorders. And when it comes to diagnosing disorders, many physicians start with the most common first, such as ADHD and autism. It is possible that some children are misdiagnosed if the doctor is unaware that the mother drank during pregnancy. Harris was compelled to be honest about her drinking because her son “has no shot if we don’t start him out with a shot as soon as possible. He came into the world with the need to fight upstream.”

The task force also is trying to debunk the notion that some expectant moms can get away with drinking. Some might think, “Well my mother drank when she was pregnant, and I’m fine,” says Mehta. “The reality is, your mother was lucky. That’s how I see it.” There are several problems with this sentiment, he notes. For one, not every woman metabolizes alcohol the same. Two, the liver of a fetus can take twice as long to metabolize alcohol as the mother’s. And three, the symptoms of FASD may not be obvious at first glance; it is after all, a spectrum disorder that manifests itself to various degrees. Some children may not have the facial features, but still have aggressive tendencies as they get older or have trouble focusing, which unknowingly can be linked back to FASD. “It’s a gamble not worth taking,” Mehta says.

For those who think their child might have FASD, Mehta recommends talking to a family pediatrician first and asking for a recommendation to the nearest center that diagnoses and treats the disorder. Other resources include the websitebeintheknownj.org, which provides information on local FASD centers, treatments and more. The National Organization on Fetal Alcohol Syndrome also has local chapters for support and advice.

“It’s the most preventable birth defect,” May says. “It’s not genetically passed down. It’s a choice and a behavior and the consequences can be a life-long issue for the child and the family.” She encourages all women who might think they might become pregnant to avoid alcohol usage altogether.

As for Harris and her son, they try to live life the fullest they can. Her son goes to overnight day camps in the summer, and the two hike and go camping. He’s also a boy scout, and she’s the chaplain. The two are very active in their community. However, she has fears what’s going to happen when she and his father—the two are divorced but have remained on good terms—are no longer there to help him. “He will need assistance for the rest of his life,” she says.

Harris believes as more awareness is brought to FASD, there will be a lot more moms who will experience shame and guilt over their child’s condition, realizing it could have been avoided.

She volunteers to meet with other moms whose children have FASD. She often tells them to “put down the bat and pick up the feather” or, in other words, to stop beating themselves up. And then she listens to their stories and never interrupts. “That is how people heal.”

Monica Rozenfeld is an editor and freelance writer based in New Brunswick.

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