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Why South Carolina parents of children with fetal alcohol spectrum disorders feel isolated, frustrated, and overshadowed

pregnantFASD.jpg
Alicia Petresc
/
Unsplash
Most women who drink even a little stop by the time they get a baby bump like this. The problem is, most women also don't know they're pregnant right away.

By the time Maria Parsaca relinquished the mic, the room itself felt like it was gasping for air. Dozens of men, women, and children were left dumbstruck by her story and her plea for help.

About nine years ago, Parsaca adopted an infant son from a rough upbringing. Like a lot of adoptive parents, she wanted to take a baby with a bad break and give him a loving home.

What she didn’t see was something commonly referred to as an “invisible disease.” Parsaca’s son’s brain had been damaged in utero by alcohol; just not badly enough for it to show.

Fetal alcohol spectrum disorder, or FASD, is a broad-ranging condition that can affect a brain anywhere from somewhat – maybe trouble remembering in the short term, maybe some impulse control or problems concentrating – to severe.

On the severe end, fetal alcohol syndrome (FAS) becomes easily identifiable and diagnosable. FAS comes with distinguishing facial features and cognitive impairment closely resembling the more severe end of the autism spectrum (which FASD is often misdiagnosed to be).

But FASD is a broad spectrum, and if fetal alcohol exposure doesn’t manifest as something measurable with calipers in a pediatrician’s office, it tends to fly under the radar.

And this is what Maria Parsaca has lived with for years. As her son grew, his behavior became more erratic; more frustrated; eventually more violent. At first, she says, his violence was self-directed, including a moment as a toddler when he dug out one of his own teeth with a spoon.

As he grew more, Parsaca says, her son started to lash out; hurt a family pet; become more aggressive.

At four years old, the boy ran into traffic. It wasn’t the thoughtless abandon of youth. He was, she says, trying to kill himself.

This was the age at which Parsaca first had her son hospitalized, in Charlotte, for his mental sickness. Charlotte kept him for a short time, then sent him home with a recommendation to put him in a different care setting. She did. He was, she says, sexually abused while he was there.

And so we come to early September, 2022, when Parsaca told a packed Rock Hill City Council chamber room most of what you just read. The people were there to attend the second event in a series of ‘Safe Space’ nights sponsored by SCETV to get discussions of mental health and suicide prevention started in communities around the state. Members of the audience were encouraged to come up to the mic and share their stories.

Maria Parsaca’s ended with a hard question: “What’s a mom supposed to do?” And closed with a plea for help.

But, at least at the moment, there’s not much help for Parsaca nearby. She says she was contacted by NAMI, the National Alliance on Mental Illness, following the Safe Space meeting. Rock Hill-area NAMI members were in attendance at the same event and were the first to take the mic after Parsaca finished. Parsaca says she’s been offered emotional support from NAMI but has yet to take the alliance up on it, as their schedules often clash.

But past moral support, there’s little locally for Parsaca and her family to do when it comes to treating her son and navigating his outbursts, which cause even the family dogs to run and hide behind locked bedroom doors. There is no pediatric psychiatric care facility in York County; and the state Department of Health and Environmental Control (DHEC) said in an emailed statement to South Carolina Public Radio that finding a facility in the state can be tricky – facilities may offer services aimed at treating FASDs, but they don’t have to report that specialty to DHEC.

And that, as with many aspects of FASDs, leaves families to figure it out on their own.

On their own

Parents of children affected by FASD tend to find themselves on their own islands. Until Maria Parsaca knew that her son had been exposed to alcohol in the womb, she had to cobble together information and various diagnoses as they came along.

This is similar to what happened to Leslie Jurado, a pediatric occupational therapist based in Rock Hill. For eight years, Jurado’s adopted son was diagnosed with all manner of mental and behavioral maladies. In occupational therapy school, she was taught about FAS, but not about FASD.

“It was never presented as a spectrum,” Jurado says.

And so, even medical professionals didn’t tend to know to look for signs of prenatal alcohol exposure that didn’t fit neatly into a visible display of facial features and head circumference measurements.

“It took eight years” for doctors to finally identify that her son’s emotional issues were on the fetal alcohol spectrum, Jurado says. “Visiting psychologists, psychiatrists, developmental pediatricians, my regular pediatrician, and counselors, specifically about hard behavior, no one ever brought up FASD.”

In her practice, in which she helps parents learn to navigate the challenges of having children with cognitive and developmental conditions, Jurado has increasingly become the first voice to suggest that some behavioral problems might be FASD. She sees things even pediatricians don’t, and says that in the two years since her Rock Hill practice has been open, she’s spotted at least 15 cases of what she’d suspected would be FASD in children that turned out to be correct.

Her perspective is one of empathy built from immense personal tragedy.

“Our oldest biological child had a neurodegenerative disease, which is incredibly rare,” she says. “With her disease, the children are typical and then the central nervous system is attacked. So what goes first? Behaviors, speech, sleep disorders, all these things that look like a really hard child.”

Out in the world, Jurado saw the stares of judging parents, who seemed convinced they were watching a bratty kid throw tantrums.

“Society's reaction was – especially mothers – shaking their heads and cutting their eyes.”

Fast-forward 10 years later, when the girl was in a wheelchair and the same disease that affected her behavior had gotten to the point at which she couldn’t hold her head up anymore, and people tripped over themselves to get the door for her, Jurado says.

“So having lived that, I 100-percent understand how frustrating it is to not get supports if your loved one does not look disabled,” she says. “In many ways, parenting kids with an FASD can be harder than that … because of the lack of support, empathy, understanding, and appropriate education. It is very frustrating.”

The adoption link, the message, and the numbers

Correlation is not causation. It’s important to keep that in mind.

But there is an unmistakable correlation between adoption – particularly adoption from foster care – and FASD. The National Organization on Fetal Alcohol Syndrome estimates that “almost 70 percent of the children in foster care are affected by prenatal alcohol exposure in varying degrees.”

NOFAS also estimates that up to 80 percent of children with FASDs do not stay with their birth families “due to the high needs of parents and children,” and that “a rise in alcohol and drug use by women has resulted in 60 percent more children coming into state care since 1986.”

And those numbers were all pre-Covid pandemic, when alcohol consumption rose across the board.

The number of cases of FASD in South Carolina is hard to track, in part because no one has been tracking trends in FASD here and in part because FASDs are often misdiagnosed as something on the autism spectrum or ADHD, or some other behavioral/cognitive condition.

The national Centers for Disease Control and Prevention (CDC) straight-up says on its website: “We do not know exactly how many people have fetal alcohol spectrum disorders.” The agency estimates there are “0.2 to 1.5 infants with FAS for every 1,000 live births in certain areas of the United States,” and those “certain areas” are in the Southwest, where FASDs particularly plague Native populations.

On Sept. 8 – the day before National FASD Awareness Day and a quarter of the way through FASD Awareness Month – the South Carolina Department of Social Services (DSS) and the state Department of Alcohol and Other Drug Abuse Services (DAODAS) announced a collaboration to combat FASDs by raising awareness of the dangers of drinking at any time during pregnancy.

“Alcohol, like carbon monoxide from cigarettes, passes easily through the placenta from the mother’s bloodstream into her baby’s blood during pregnancy,” said DAODAS Director Sara Goldsby in a press release announcing the collaboration. “So every time a pregnant woman has a drink of alcohol, her unborn child has one too. It is crucial for all women to understand that FASDs are 100 percent preventable and 0 percent curable.”

Both those figures are accurate, of course, but getting the message across is tricky. Abstinence, after all, has never been a best-selling message, whatever the thing from which to abstain is.

Nevertheless, Cheryl Wissick, a former professor of education at the University of South Carolina , mother of an adopted adult child with FASD, and an FASD advocate, says the only way to really stem FASDs is to stop them from occurring in the first place.

“If you think you're going to get pregnant, stop drinking and maintain abstinence throughout pregnancy,” she says.

What’s important to understand is, most women do stop drinking when they find out they’re pregnant, but that could be several weeks into a pregnancy. And even small amounts of alcohol in those first few days or weeks could be troublesome.

But how to get that message across without being sanctimonious is not so easy. Shaming, in particular, is unlikely to work. A 2019 report in the New York Times lays out the problem with tut-tutting women who might drink while pregnant this way: women who drink before they know they’re pregnant and then find out they’re pregnant might just stop seeking out prenatal care entirely.

And alcohol holds a special place in American hearts. Alcohol companies sponsor sports games (including college) and major concerts; alcohol is associated with a good time and a great weekend – not to mention being associated with certain pursuits that might involve sex and, eventually, pregnancy.

The CDC reported that in 2019, 56.4 percent of women in South Carolina between ages 18 and 44 – prime child-bearing age – drink alcohol.

Resources

Learn more about FASDs in America from the CDC by clicking HERE

And from the Department of Alcohol and Other Drug Abuse Services and the South Carolina Department of Social Services by clicking HERE (Don't Risk It SC)

Find parental FASD support groups HERE

And find additional FASD resources HERE

Further information on and recordings of SCETV Safe Space can be found HERE

Mental health help can also be found at the National Alliance on Mental Illness, HERE

And with the South Carolina Department of Mental Health, HERE

The National Suicide Prevention Hotline can be reached by calling or texting 988.

Scott Morgan is the Upstate multimedia reporter for South Carolina Public Radio, based in Rock Hill. He cut his teeth as a newspaper reporter and editor in New Jersey before finding a home in public radio in Texas. Scott joined South Carolina Public Radio in March of 2019. His work has appeared in numerous national and regional publications as well as on NPR and MSNBC. He's won numerous state, regional, and national awards for his work including a national Edward R. Murrow.