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 foster mother who hopes to adopt him, “it’s like he’s lighting up the whole room.”
Robert’s doctor says the baby’s struggles are due to what his birth mother ingested while she was pregnant – a substance known to cause serious physical and neurological abnormalities in a developing foetus.
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 US National Organization on Fetal Alcohol Syndrome (Nofas).
Alcohol caused Robert’s birth defects and developmental delays, according to his paediatrician, Dr Renee Turchi, medical director of the Center for Children with Special Health Care Needs at St Christopher’s Hospital for Children in Philadelphia, United States.
Robert suffers from foetal alcohol syndrome, the most severe, physically-disfiguring form of foetal alcohol spectrum disorder (FASD). It involves a wide range of disabilities, birth defects and behavioural 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% of US 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% of children with autism spectrum disorder.
Dr Turchi, a lead author of the new AAP report, along with colleagues in the academy’s ongoing education and awareness campaign, are encouraging doctors 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 recognised.
“We’re still not there, even the medical community,” she said.
“You still have some folks telling people, ‘Oh, it’s okay to drink’ (during pregnancy). And it’s really not.”
Dr 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 realise they’re pregnant.
Nearly half of all US 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.
Even for women who aren’t pregnant, the amount of alcohol medical experts consider acceptable is far less than what many people think. “Moderate drinking” outside of pregnancy is classified as no more than one drink per day. Binge drinking for women is defined as four drinks within a two-hour period.
Mitchell is a self-described member of the drugs, sex, and rock and roll Woodstock generation. She thought she was reining in when she stuck to alcohol during her pregnancies in the 1970s. At that time, the threat to a developing foetus was not widely known.
But when one of her children was a teenager, a diagnosis of suspected cerebral palsy was changed to FAS. Mitchell thought of two babies she had lost – one who died at birth and another lost to sudden infant death syndrome.
“I now believe that prenatal alcohol exposure was the main reason my children did not survive,” said Mitchell, an addiction counsellor.
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.”
Dr 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,” Dr Turchi said. “He felt like he gave his son foetal alcohol syndrome.”
Many of these youngsters, for example, don’t grasp the idea of stranger danger, leaving them vulnerable to predators.
They may also 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% of people with foetal alcohol disorders over age 12 have been charged with a crime, according to Nofas.
Sometimes, their behaviours mimic other conditions.
Dan Dubovsky, 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 behaviour in school was chalked up to attention deficit hyperactivity disorder, and he was prescribed methylfenidate.
“It made him act out even more,” Dubovsky said.
But there can be hope for children with FAS, especially when they get the right kind of help.
Take Andrew Cambridge, 19. When not at school or helping at his church, this dedicated artist is often working on the comic character he has created, “Rekomon! The Karate Cat”, a martial arts feline full of untapped potential.
“He’s just a kid, so there’s way more power in there,” Andrew said of the character he’s created. “He doesn’t know about his true ability yet.”
His parents Mildred and Harold Cambridge took him into their home at age six months. Andrew was born premature at 26 weeks and 1.5 pounds (0.68kg).
The Cambridges, who formally adopted him a couple of years later, were told he probably wouldn’t live very long, and never walk or talk. “I said, ‘We’ll see about that,’” said Mildred.
Dr Turchi, now his doctor, said Andrew was exposed to alcohol and crack cocaine before birth, resulting in partial FAS with some intellectual disability, along with other birth defects.
But the Cambridges, who have other adopted children, as well as biological offspring, were steadfast advocates, making sure he got into programmes that could help him such as Early Intervention, therapies and supports in school.
“You can’t underestimate (children with FAS),” Mildred said. “You never know what they will do.”
And Andrew isn’t done. He says his dream is to work for the Cartoon Network. He’d like to see “Rekomon! The Karate Cat” on TV.
“If that doesn’t work,” he said, undaunted, “we can try the Nickelodeon station.” – The Philadelphia Inquirer/Tribune News Service