The boy was only two days old when his mother slipped out of the hospital. Hours later, he shuddered and convulsed, his body going into withdrawal from the opioids he had grown used to in her womb.
A couple from Georgia arrived. They had supported the baby’s biological mother financially during her pregnancy. But they didn’t know about the drugs. They watched him scream and wail for three hours. Then they left, too.
Those first few days, the baby had multiple seizures. Nurses peered at him from outside his incubator. They swaddled him tightly in a blanket and gave him morphine and methadone.
Social workers arrived. They saw the boy’s silky brown hair, his skin now bright red from crying. They’d seen so many babies like this struggling to live. All alone.
It was hard to find homes for the ones in drug withdrawal.
• • •
On Feb. 26, 2013, DeAnne DeCicco was at home in North Fort Myers, watching the Today show with a cup of coffee, contemplating a run, when the phone rang.
An adoption agent offered DeAnne and her husband, Bill, a mixed-race infant who had been exposed to multiple drugs. His previous adoption had fallen through. They had four hours to say yes or he would become a ward of the state.
He was six days old when a NICU nurse at Sarasota Memorial Hospital removed wires that measured his heart rate and seizure activity and lifted him into DeAnne’s arms. He seemed groggy, his eyes opening and closing intermittently. His head seemed so big.
DeAnne sobbed. She’d dreamed her whole life of this moment. It wasn’t what she’d envisioned growing up but it felt right.
Very few studies document what the future holds for babies exposed to opioids like heroin, oxycodone or methadone, but some develop physical and psychological problems.
DeAnne wanted a child so badly, she was willing to take the chance to find out.
• • •
They called him Enzo.
He had a severe case of neonatal abstinence syndrome (NAS), an opiate withdrawal disorder that can impair everything from the central nervous system to the gastrointestinal tract. In the hospital, Enzo slowly developed just about every symptom of the condition.
He cried despairingly. He experienced tremors, breathing problems and continuous diarrhea. His muscles contracted and became noticeably toned. He had trouble sucking and lost weight. His limbs froze in place and he suffered multiple seizures from abnormal electrical signals in the brain.
Since 2000, the number of babies born in withdrawal has grown more than five-fold. This is largely because doctors have been more likely to prescribe opioids to pregnant women for pain, and more women have abused prescription drugs and turned to opioid-substitution programs for treatment, write researchers in the New England Journal of Medicine.
[JOHN PENDYGRAFT | Times]
In 2010, the same year prescription drugs claimed the lives of 2,700 Floridians, the state moved to shut down unregistered pain clinics and instituted a prescription drug monitoring program. Within two years, drug overdoses were cut in half, the first documented decline in any state during the previous decade, according to the Centers for Disease Control and Prevention.
But the changes were slow to reach the babies. Between 2012 and 2015, about 6,000 babies were born with neonatal withdrawal in Florida alone, trailing the state’s prescription drug epidemic like a dark cloud.
Today, at Johns Hopkins All Children’s Hospital, these babies are more likely to have been exposed to methadone than oxycodone, a sign that more pregnant women are in treatment, says Dr. Aaron Germain, director of the hospital’s neonatal abstinence task force.
The problem is worse when these mothers take other drugs on top of their prescribed medications.
This is likely what Enzo’s biological mother did, doctors told DeAnne and Bill.
On her hospital paperwork, Enzo’s biological mother had written that she was taking Suboxone, which is an opioid medication prescribed by doctors for addiction. It is a combination of buprenorphine and naloxone, semi-synthetic opioids that stall the cravings but do not deliver the high.
So she had wanted to quit and had even gone for drug treatment. But somewhere along the way, she’d failed and taken other drugs, too.
• • •
For 25 days, DeAnne and Bill sat by their child’s hospital bedside as he convulsed and vomited and screamed.
[DeCicco family photo]
They thought that perhaps raising a child struggling with the effects of drug addiction was something they could handle better than most.
“A lot of people don’t want to take it on because there are a lot of unknowns,” DeAnne said. “It wasn’t a deterrent to us. If anyone was able to cope, we were.”
DeAnne, a hair stylist and a marathon runner, is 37, vivacious, petite and lithe with a black pixie cut, sort of like a female Peter Pan. Bill, who once owned a car dealership, is thin, muscular and reserved, 29 years older than DeAnne. They are both originally from Brooklyn and had met at church and the gym. Neither had any children.
They had both experienced the pain and frustration of living with someone else’s drug abuse. Bill’s first wife died of an overdose. DeAnne left a previous marriage because of it.
But they were ill-prepared for what they witnessed.
Babies with neonatal withdrawal usually lose up to half their weight in the first weeks because they can’t coordinate the suck and swallow motion to get nutrition.
At birth, Enzo weighed 8 pounds, 13 ounces and measured 21 inches long. His biological parents were big, too. On her hospital paperwork, his mother, who was 27 and white, wrote that she was 5-foot-10. For his father, she had written: “6-foot-5 Jamaican.”
Within days, Enzo dropped to less than 5 pounds. Sometimes, his seizures came once an hour. The machines beeped and buzzed.
“It was the saddest thing I ever saw,” DeAnne said.
The nurses called Enzo’s tremors “episodes.” They encouraged the new parents to remain calm. That would help Enzo stay calm.
Just before they took him home, the DeCiccos received a visitor. Johns Hopkins All Children’s Outpatient Care was starting a developmental follow-up program for children with neonatal abstinence syndrome. Doctors would evaluate him at regular intervals until age 5. The evaluations were free, the money coming from an anonymous donor.
Did the new parents want to enroll Enzo?
• • •
Those first few months at home in North Fort Myers, Enzo still had seizures and he could barely move his stiff arms and legs. But they could see there was a sweet little boy inside.
Bill and DeAnne wanted to give Enzo the best chance in life, but they had little idea what that meant.
[JOHN PENDYGRAFT | Times]
The FDA has categorized methadone and most other opioids as Pregnancy Category C5 drugs, meaning there are not enough long-term studies on its effects. The National Institutes of Health has recommended “medication assistance” as the standard of care for pregnant women addicted to opioids. Doctors believe that prescribing it to pregnant mothers is better because it reduces high-risk behavior and leads to babies with a higher birth weight.
But far too many children born with neonatal withdrawal are growing into 3- and 4-year-olds who lag behind their peers — physically, academically and behaviorally, according to several studies. Some have vision and memory problems. One study of students born with neonatal withdrawal in Australia showed them well behind their peers academically by seventh grade, according to an article published in January in Pediatrics.
If it were a competition, these children would start at the back.
“This is a high-risk group of children and they need to be followed and watched,” said Dr. Tony Napolitano, chairman of pediatric medicine at Johns Hopkins All Children’s Hospital, and medical director of the neonatal withdrawal outreach program where Enzo receives treatment.
But these children, for the most part, are not being followed in any coordinated way across the state. The Florida Department of Children and Families does not even have numbers on children with neonatal abstinence syndrome in its care. A spokesman said the agency only began collecting the data in March.
Across the state, few children with neonatal withdrawal have access to a developmental follow-up program.
And this is what makes Enzo’s story unique. He is an example of what’s possible when a child with his condition receives lots of attention.
His therapy began at two months old, as physical therapists worked to liberate his arms and legs, which were stuck in place from all the shaking and tremors.
Every milestone became a challenge. Enzo toiled to roll over, to crawl, to stand up, to walk, which he didn’t do until he was 14 months old. He knuckled his feet and fell a lot.
Once one problem was solved, another popped up.
At age 2, Bill and DeAnne heard choking sounds through the monitor at night. A doctor ordered Enzo into a sleep study, which revealed that in one 24-hour period, he had 17 possible seizures, most of them undetectable. He had surgery to remove his tonsils. That helped another problem that he had lagged behind on, his ability to speak more than a mumble.
Like many children with neonatal withdrawal, Enzo was diagnosed with sensory input dysfunction, meaning his body struggled to sense and measure how much force he should apply. So whenever he drew with a crayon, it broke. He ran too fast and too hard. The sensory problem also affected how he read social cues. Sometimes he withdrew and cried; other times, he was boisterous and aggressive.
As new problems emerged, DeAnne and Bill responded. They arranged for him to see physical, speech and occupational therapists plus three additional tutors, one for academics, another for behavior and a third for his social interactions. Some weeks, he had six different people working with him on various aspects of his development. Several of the tutors were volunteers. His parents covered the rest, either out-of-pocket or with their insurance.
“We’ve done everything to give him the best chance to evolve out of this,” DeAnne said.
• • •
On a chilly Tuesday in January, at Johns Hopkins All Children’s Outpatient Care Fort Myers, Enzo, now 4, tried to pick up a pair of scissors. Instead of threading two fingers through the handle, he stuffed three.
Karen Fiegland, an occupational therapist with white hair and small oval glasses, shook her head.
“No, put it down,” she said, “and put in two fingers.”
He repeated the mistake a second time. The third time, he got it.
[DeCicco family photo]
Enzo’s mother sat on the edge of the therapy room and watched, as she has for most of the past two-plus years, eagerly awaiting his smallest accomplishments.
Enzo’s initial physical delays have almost disappeared. But now he shows signs of cognitive delays, poor recall, difficulties with fine motor skills and behavioral problems. Children exposed to multiple drugs often exhibit more complications. He would have to work harder than most children.
Enzo’s progress became evident when his parents took him to gatherings of other children with neonatal withdrawal and their caregivers. They noticed the other children displayed some of the same symptoms as Enzo. Many had cognitive and physical delays. Others acted out aggressively. Enzo had already accomplished more than they ever hoped.
“He’s miles ahead of them because of the work we put in,” DeAnne said. “It’s sad because they are already behind the eight-ball.”
Fiegland had him lay the scissors down and pick them up again. He used three fingers.
“This is the way a 2-year-old does it,” Fiegland said, “but how old are you?”
“Four,” Enzo responded.
She’d taught him to put on his socks, to feed himself with a spoon, to take turns playing the game Operation. Sometimes he retained skills quickly. Other times, he forgot over and over. Each night, he played a memory game before bed, just for practice.
Fiegland told DeAnne she’d read a book that mentioned a study of children and how they react to their environments. The study found that vulnerable children who were not particularly resilient could succeed with good parenting. They were called “orchid children.”
“A dandelion can grow in any environment,” Fiegland said to Deanne, “but an orchid needs the right environment to grow.”
DeAnne smiled, putting her arm on her son’s shoulder.
“I’m going to think of him as an orchid,” she said.
• • •
On a breezy Tuesday in March, Enzo walked slowly across the wind-blown field to his soccer coach, who was surrounded by half a dozen 4-year-olds in orange T-shirts. Enzo reached his arms above his head to create his favorite animal, a dinosaur, and stomped his feet.
“Enzo, listen to the coach,” said his dad, from the edge of the field, where three generations of Enzo’s family sat watching him.
Then, just like that, Enzo suddenly threw himself down on the green grass, pouting. DeAnne called him and he ran over. “I don’t want to play soccer anymore,” he said wrapping his arms around her neck. “I want my Mommy.”
The game grinded to a halt as everyone waited. His father whispered encouragement in his ear. His mother hugged him, told him she loved him. “Let’s stop crying and pull ourselves together,” she said firmly.
“Your team needs you,” yelled his great-grandma.
The game had started. The other team had scored. Enzo hopped in, and proceeded to score eight goals in a row, including two for the other team.
“He’s going to be better than most in most sports,” his grandpa could be heard saying. “I can see him taking tennis lessons and doing very well.”
DeAnne knew the other parents were probably frustrated with Enzo, that he stood a full head above the other 4-year-olds on his team, that he could be overbearing and overwhelming. She tried to explain before they even asked about his background. She hoped they understood.
“He doesn’t reason the way other kids do,” she said. “It’s hard to watch because you know it’s something he can’t control.”
From the start, the DeCiccos decided never to medicate Enzo, even for seizures, unless absolutely necessary. He likely will need to go to a private school with aides to help him, DeAnne said.
“He has a lot of confidence,” she said, “and we don’t want to quash that.”
• • •
DeAnne watched Enzo race around the caged pool behind their home six times in a row, his blue leather sneakers slapping the pavers too hard. He sported a thatch of thick brown-blond hair and a red and white-striped hoodie. His delicate features were animated with laughter.
Enzo hopped up and down on the trampoline, rolled beneath it, then stood, upending the trampoline. His mother rushed over to sort it out, but Enzo was throwing over his Little Tikes basketball hoop. He pushed it hard, the industrial plastic scraping the brick pavers with a roar as he yelled: “It’s my rocket ship.”
This hyperactivity is common with children exposed to opioids in utero. Every day, Enzo would don a 7-pound vest and run around the tile porch, sometimes as much as 40 or 50 times a day. His energy level was so intense that if they were going to a restaurant, his mother stacked a dozen or so books in his blue wheelbarrow and had him pull it 15 times around the cul-de-sac outside their yellow stucco home. Still, he never tired.
[JOHN PENDYGRAFT | Times]
Enzo left the basketball hoop behind and moved over to the counter, near his father, Bill, 66, just as he opened a can of pears and turned for a moment. Enzo grabbed at the can, cutting his finger. It was a deep gash but Enzo, who has an extremely high pain tolerance, did not seem to notice — until he started bleeding.
“Mommy, I don’t want it to be bleeding anymore,” he whined sadly, coming to the sink to let his mother wash off the blood.
DeAnne peeled open a Band-Aid.
It was hard to distinguish what was the normal 4-year-old and what were the remnants of the neonatal withdrawal. Enzo could be sweet and polite one minute, willful and irresponsible the next. He had run down the street to a friend’s without permission. Bill, the more stern parent, grounded him from watching TV and cartoons featuring his favorite character, Minnie Mouse, for a week for that one. His continued misbehavior dragged the punishment on for 34 days.
His mother said she was more “day to day.” She didn’t want him labeled a “behavioral problem” child. Her biggest worry, she said, is that he will grow up and be sad. “He’s so endearing and lovable,” she said. “He’s got this great little spirit and a really great heart and we don’t want to crush that.”
She caught him as he ran by and hugged him, delivering a kiss on his cheek.
“Mommy, Mommy, tell the Enzo story,” he said.
His parents looked at each other and smiled. They sat down on the gray leather couch in their living room with him between them.
Enzo wanted to hear his story at least three times a week.
DeAnne began: “Okay, so ...”
“We got a phone call about a baby and it was me,” Enzo broke in with a big smile.
“Yes, and you were not in Mommy’s ...”
“Belly,” said Enzo.
“But you were always in our ...” DeAnne said.
“Hearts.” He didn’t ask questions yet. One day, she knew he would.
“Yes, and who brought us together?” DeAnne asked.
“Jesus,” Enzo responded. He sat on the floor now, his head leaning against her knee.
“That’s right, Jesus made us a family. We didn’t see him in the hospital because he’s in your heart.”
“I was in a bubble,” he said.
“That’s right,” DeAnne said. “You overcame a lot.”
Times senior researcher Caryn Baird and Times computer-assisted reporting specialist Connie Humburg contributed to this report. Contact Leonora LaPeter Anton at (727) 433-1446 or [email protected] Follow @WriterLeonora.