LEWISTON, Maine — For days, doctors and nurses kept Caleb’s newborn son in a dark, quiet area of the hospital, where they hoped the baby’s opiate withdrawal would be relatively quick, relatively easy.
He spent 11 days in the hospital’s neonatal intensive care unit, where a rotating series of medical personnel tried to gauge his level of withdrawal by the intensity of his cries, the wateriness of his stools and whether he was wracked by jerks or tremors.
Caleb could only watch as his son cried and clenched his little body.
Doctors put the baby on medication to prevent potentially dangerous seizures. He was allowed to go home nearly two weeks after he was born, but he would stay on anti-seizure medication for months.
“I felt totally helpless,” said Caleb, an Auburn man who asked that only his middle name be used, in part because his son’s situation affects the whole family and, “We have caused them enough embarrassment over the years.”
Caleb’s wife — his son’s mother — was addicted to drugs when she gave birth.
Had he been born in 2005, Caleb’s son would have been a rarity in Maine, one of 165 babies affected by drugs.
But in 2011, he was one of 667 newborns affected by drugs — four times more than six years earlier.
In 2009, the latest year complete figures are available, more than 2 percent of all Maine newborns showed withdrawal symptoms. Experts say that number is likely higher today. As opiate addiction has ballooned in Maine, so has the number of babies paying the price.
For infants, it can mean days or weeks suffering through a withdrawal that can leave them shaking, vomiting and unable to eat or sleep. For the families, it can mean dealing with a sick newborn when Mom and Dad are already stressed and, sometimes, in the midst of battling their own dependence. For hospitals and state agencies, it means something new to watch for, new protocols to follow, new safeguards to put in place.
For everyone, however, the long-term consequences are less clear.
Substance abuse has long been a serious problem in Maine. In recent years, addiction to opiates — including OxyContin and other prescription pain medication — has skyrocketed.
Although opiate addiction is an issue nationwide, Maine has the highest addiction rate per capita, according to the Maine Office of Substance Abuse. More Mainers now seek treatment for painkillers than for alcohol.
It’s unclear exactly why opiate addiction has become so prevalent in recent years. Some experts believe it’s because doctors prescribe painkillers too often and too readily, making it easy for people to get hooked. Others believe the pills’ prevalence in society has made them especially easy to illegally obtain and abuse. Teens can find them in their parents’ medicine cabinet, for example.
Others say too many people simply don’t realize the medication can be a problem until it’s too late.
“There’s a lot of education that needs to be done,” said Geri Tamborelli, nurse director of the Family Birth Center and NICU at Maine Medical Center in Portland.
Whatever the reason behind the increase in addiction, it’s clear that more infants are being exposed to drugs because of it. At Maine Med, for example, 18 newborns in 2001 went through such severe withdrawal that they had to be treated with medication. In 2010, that number was 120.
Between 2005 and 2011, the Augusta, Bangor, Lewiston, Portland, Rockland and Skowhegan areas saw the largest increases in babies affected by drugs, according to the state. The majority of those newborns were exposed to opiates.
When talking about infants and drugs, experts use the term “exposed to” or “affected by,” rather than “addicted to.” Addiction includes drug-seeking behavior, they say, and while a newborn’s body may be dependent on drugs, that infant isn’t drug-seeking like an addict.
In infants, opiate withdrawal can range from mild to severe. In the mildest cases, it can be difficult to tell an infant is in withdrawal. That baby might be a little fussier than other newborns. In severe cases, the baby can shake, vomit, have trouble eating and sleeping, have diarrhea and cry inconsolably.
“The great majority of symptoms are not lethal, but it’s inhumane to allow a baby to go through that,” said Mark Brown, chief of pediatrics and NICU medical director at Eastern Maine Medical Center in Bangor.
Babies in severe withdrawal are also at risk of seizures, which can potentially be dangerous.
Lacking a quick blood test or other concrete measure, hospitals have come to gauge a baby’s withdrawal by charting symptoms and giving each a score. Infants in mild withdrawal are typically watched closely for several days and placed in a dark, quiet area where they can sleep and be soothed. Infants in severe withdrawal can require placement in a NICU for days or weeks and require medication to prevent seizures and, sometimes, drugs to wean them.
Caleb’s son was about in the middle of the spectrum, leaning toward severe.
When he was born, the boy joined a family of four — Caleb, his wife and their two school-age children. Caleb had battled alcoholism. His wife, he said, had a problem with prescription drugs that started years before.
“I think she’s always had a problem with it, but after the first child she got prescribed it for help with her postpartum depression,” he said. “And then she was able to get it increased, then buy it off the street. She’s been to rehab several times.”
Caleb’s wife did not return calls seeking comment for this story. Husband and wife are separated.
Caleb said his wife got clean when she had their second child, but she struggled with addiction afterward. She was taking drugs when she became pregnant with her third child and went to rehab about halfway through her pregnancy, he said. She stayed on Subutex, a drug that, like methadone, is supposed to help addicts get through the dependency and cravings that come with opiate addiction.
Experts warn that women should not quit taking opiates or try to wean themselves off the drugs while pregnant. Without medication like methadone or Subutex to take the place of the opiates, they say, women are at high risk of delivering early, which can cause long-term health problems for the baby. They are also at risk of miscarrying.
Although newborns can go through withdrawal when their mothers take methadone or Subutex, that withdrawal is supposed to be more mild than with street drugs or prescription opiates.
Caleb said he and his wife spoke to her doctors while she was pregnant and advised them of her situation, as experts recommend. When their son was born in December, he seemed fine.
“The next day, everything was great,” Caleb said. “We didn’t see any signs of anything. We felt everything was going to be all right. They came to him and they scored him … and he was doing good. And then all of a sudden, it turned. It got so that he was clenched up. They didn’t like his bowel movement. He cried, excessive crying.”
To Caleb, already a father of two, his newborn son’s behavior didn’t seem far from that of a normal, fussy infant. But nurses rated him for withdrawal symptoms like rigidity and excessive crying, and those scores were too high.
For 11 frustrating days, Caleb watched his son lie in the NICU. Although experts say parents are usually encouraged to cradle and soothe infants going through withdrawal, Caleb said medical personnel at his hospital wouldn’t let him pick up his son. Finally, on Christmas night, the newborn’s withdrawal scores dropped. Doctors kept him on phenobarbital, an anti-seizure medication, but he was allowed to go home.
Six months later, Caleb’s son is off the anti-seizure medication. And though he’s not yet sleeping through the night, he has hit developmental milestones.
Caleb and his wife are separated. They share custody of the children.
“He’s a cutie,” Caleb said. “He seems healthy. Every doctor’s appointment we go to he’s healthy, but I am worried about the future.”
Hospitals, state respond
Although the number of drug-exposed newborns is on the rise in Maine, each case is different. Many are babies born to women who are getting help for their addiction and were taking methadone or Subutex during their pregnancy. Some are born to women taking prescription painkillers. Others are born to women who were in the midst of addiction and took whatever drugs they could find.
At Eastern Maine Medical Center in Bangor, which has seen one of the largest increases in drug-affected babies, most mothers of those infants took prescription drugs, methadone or Subutex. About 10 percent (“Far less than what you’d think,” Brown said) took street drugs or illicit drugs.
Many doctors and nurses now routinely ask expectant mothers if they’re using. They say some women lie about their drug use, but many are honest about it for their babies’ sakes. Whether or not women are honest, hospitals are required by law to call the Department of Health and Human Services when medical personnel suspect a newborn has been exposed to drugs.
It’s unusual for DHHS to place infants in foster care solely because they were born addicted to drugs. If a mother is getting help for her addiction, has a stable home life and a good support system, it’s likely the baby will be sent home with her. If caseworkers are concerned the baby could be abused or neglected because of the mother’s drug use, they could send the newborn home with the father, a grandparent or another relative.
DHHS has seen an increase in the number of children entering state care because of their parents’ drug abuse. In December, DHHS cared for about 1,500 kids. Last week, it cared for 1,609, a net increase of about 100 kids in six months.
“We have taken significantly more children in care, particularly in areas where substance abuse is a huge problem — Bangor, Rockland, coastal Maine, Biddeford,” said Therese Cahill Low, director of the Office of Child and Family Services.
As the number of drug-exposed infants grows in Maine, hospitals and state agencies are working on ways to cope. Written hospital protocols tell doctors and nurses exactly what they should do if a baby scores high for withdrawal. Special brochures tell parents and families what to expect if their baby is born exposed to drugs.
St. Mary’s Regional Medical Center in Lewiston is educating parents on the signs and symptoms of withdrawal and getting them involved with their newborns’ care plans.
“We don’t want them to come up here and then be like, ‘Oh, my god, we didn’t know we’d be staying for five days; we didn’t know what the baby was going to be going through. We didn’t know what the risks were,’” said Bobbie Olsen, patient care leader at St. Mary’s.
One thing that can be a surprise: the cost of care. It’s unclear how much money drug-exposed newborns cost the state, insurance companies or parents, but it is more than the cost of healthy newborns.
At St. Mary’s, for example, which doesn’t have a NICU and doesn’t care for infants in severe withdrawal, the average cost of care is $2,500 for a drug-affected newborn, compared with about $1,375 for a healthy newborn. Last year, 95 percent of the hospital’s drug-affected newborns were on Medicaid, compared with 23 percent of all babies born there.
At CMMC, the room rate for a healthy newborn is $550 a day. Most stay two or three days. Infants that may be drug-exposed stay at least five days. For those in withdrawal severe enough to require a stay in CMMC’s NICU, the room rate is $1,100 a day, and stays there can last weeks.
The critical factor: Home life
What does the future hold for those infants?
That answer is still up in the air.
About 13 years ago, a large federal study began following more than 650 drug-affected newborns as they grew up. The study found that prenatal drug exposure put the children at greater risk of developmental issues and other problems, but what mattered more was the child’s home life.
Infants exposed to drugs but raised in safe, supportive environments were likely to be OK. Infants exposed to drugs and raised in homes filled with chaos, violence, trauma and continued substance abuse were more likely to have problems.
“It’s crucial for any kid, but when you have a kid that has a known risk, it’s really important to think about what’s going to be the environmental support for that child,” said Cheryl Anne Boyce, associate director for child and adolescent research for the National Institute on Drug Abuse.
Researchers are following those children to see whether, as teenagers, they’re more likely to take drugs.
“We’re waiting for the next chapter,” Boyce said.
Doug Robbins, director of the Division of Child and Adolescent Psychiatry at Maine Medical Center, sometimes sees children who were exposed to drugs in infancy. Some of those children have attention problems and lower IQs. They can also have problems with mood regulation — which leads to more tantrums and emotional meltdowns. But like the national study, he said it’s difficult to tell whether the problems come from prenatal drug exposure or from living in a home affected by substance abuse.
“Inevitably, when people have those kinds of things going on, they have a million other problems going on that are known to have very negative effects on child development,” he said. “Drug abusers are drug abusers; they’re not only using one thing. No. 2: people who are using drugs are likely doing other things that are not good for them … it becomes a package of problems.”
For Low at the Office of Child and Family Services, the issue took on particular significance between Thanksgiving and New Year’s Day. That’s when six drug-exposed infants died in Maine — not from withdrawal but while sleeping with parents who were medicated or taking some kind of substance.
“For me, it’s so big on my radar because I get these emails when there is a serious injury or child death,” she said. “That was a horrific time period.”
DHHS is looking at ways to sooner identify families struggling with substance abuse — during pregnancy rather than after — so it can get parents help before their baby is born. It’s also working with the Office of Substance Abuse on plans for an intensive program that would give a small number of families 24-hour residential support and give a greater number of families outpatient education and services.
But experts say one of the biggest problems with getting families that help is overcoming the parents’ own shame. There’s a stigma to drug abuse. There’s a particular stigma to women who take drugs while pregnant.
“We’re really trying to involve the community and let the community know this is a problem and the solution lies within the community itself, as far as supporting these parents and not passing judgment,” Low said. “Because I’m afraid parents aren’t going to seek the help they need if they feel we’re going to take the child away or if they feel people are going to judge them.”
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