For such a little guy, Robert McCloud has worked very hard to get to where he is today.
At age 13 months, he weighs less than half of most babies his age. He has a cleft lip and trouble swallowing, so much of his nourishment comes through a feeding tube. Born with an undersized head and brain, he still can’t sit up by himself, let alone walk. No baby coos, no “mama” or “dada” sounds.
But Robert is trying hard to learn to crawl, to laugh. He does roll over. He’ll grab for anything. And, boy, can he smile.
“When he smiles,” said Kimberly Martinez, the Philadelphia foster mother who hopes to adopt him, “it’s like he’s lighting up the whole room.”
The opioid crisis has sparked fresh awareness of babies born dependent on the drugs their mothers used. But it wasn’t heroin or pain pills that caused Robert so much harm. His mother chose something far more common and, scientists say, even more devastating.
“The best science we have right now shows that alcohol is by far the most dangerous recreational drug to use during pregnancy,” said Kathleen Mitchell, spokeswoman for the National Organization on Fetal Alcohol Syndrome (NOFAS).
Alcohol caused Robert’s birth defects and developmental delays, according to his pediatrician, Renee Turchi, medical director of the Center for Children with Special Health Care Needs at St. Christopher’s Hospital for Children.
Robert suffers from fetal alcohol syndrome, the most severe, physically disfiguring form of fetal alcohol spectrum disorder, (FASD) a wide range of disabilities, birth defects and behavioral issues that experts say all too often get misdiagnosed or overlooked. Children born with an FASD may get ineffective treatment or none at all.
“Prenatal alcohol exposure is the most common preventable cause of intellectual and developmental delays and disabilities in the United States,” stated a new report from the American Academy of Pediatrics (AAP) published Sept. 10 in the journal Pediatrics.
And alcohol-related birth disorders are far more common than previously believed. An article published earlier this year in the Journal of the American Medical Association estimated conservatively that 1.1 to 5 percent of U.S. children have some sort of alcohol-related disorder — as much as five times what had been previously thought and more than the approximately
1.5 percent of children with autism spectrum disorder.
Turchi, a lead author of the new AAP report, along with colleagues in the academy’s ongoing education and awareness campaign, are encouraging doctors nationwide to learn more about FASD, screen all patients, and help their families get the therapy and support they need. The extent of the dangers, she said, are not widely recognized.
“We’re still not there, even the medical community,” said Turchi. “You still have some folks telling people, ‘Oh, it’s OK to drink’ (during pregnancy). And it’s really not.”
Turchi said the message is clear. “There is no safe time, amount, or type of alcohol to drink when a woman is pregnant.”
Meanwhile, child advocates are also urging more maternal education. While not all children exposed to alcohol in the womb end up with problems like organ defects, unexplained aggression, or learning disabilities, subjecting an unborn child to any amount or form of alcohol could be dangerous.
There is no risk-free point in pregnancy to consume alcohol, including right after conception when the neurological system is starting to form, and many women don’t realize they’re pregnant. Nearly half of all U.S. pregnancies are unplanned. Studies have shown that drinking during weeks six through nine of a pregnancy has been linked to developing FAS’ facial abnormalities.
Women do not need to be alcoholics to harm their babies. For obvious reasons, it’s not possible to run clinical trials on alcohol use during pregnancy, so just how much alcohol it takes to produce lasting problems is not clear. But even less severe forms of FASD, though they may produce no physical evidence, can have far-reaching effects.
Doctors and health providers, she said, should create a clearer road for women to seek help.
“We should be asking everyone at their annual exams about alcohol and drug use in a very matter-of-fact way that’s not judgmental, that’s not like a witch hunt,” Mitchell said. “We ought to be treating this as a medical problem and take the blaming and shaming out of it.”
Turchi agrees that some doctors are missing the opportunity to reach women using alcohol during pregnancies and help them and their babies.
She recalled the mother of one of her infant patients, a woman in opioid addiction. The baby’s father said he would give his partner alcohol to try to keep her home, thinking it was better for their baby than her being out on the streets using heroin.
“It was horrible,” Turchi said. “He felt like he gave his son fetal alcohol syndrome.”
Many of these youngsters, for example, don’t grasp the idea of stranger danger, leaving them vulnerable to predators. They also may be easily manipulated, can be very impulsive or emotionally immature, and many don’t understand the concept of cause and effect — all of which can lead to trouble in school or even with the law. It’s estimated more than 60 percent of people with fetal alcohol disorders over age 12 have been charged with a crime, according to NOFAS.
Sometimes, their behaviors mimic other conditions. Dan Dubovsky, a Philadelphia resident who adopted a boy with FAS and now advocates for FASD children and families, said conventional therapies or medications often don’t work with these youngsters — or worse.
Before Dubovsky’s son Bill was eventually diagnosed with FAS, the boy’s behavior in school was chalked up to attention deficit hyperactivity disorder, and he was prescribed Ritalin.
“It made him act out even more,” Dubovsky said.
But there can be hope for children with FAS, too, especially when they get the right kind of help.
Rita Giordano is a writer for
The Philadelphia Inquirer.