Luz Rangel had run through her $10,000 savings and was cleaning houses to pay for her daily heroin use when she found out she was seven months pregnant.
The 26-year-old Tucson resident sobbed for hours upon learning during an emergency room visit in April that she was going to be a mother. She was devastated to think what she might have done to her unborn child.
Though she felt ashamed, she ended up admitting to staff at Banner University Medical Center-Tucson that she was misusing heroin and that she and her baby needed help. She immediately started methadone treatment and began regular meetings with Banner neonatal specialists.
At the moment Rangel asked for help, the hospital’s doctors and nurses were in the midst of overhauling the way they treat a rising number of newborns who have been exposed to opioids in the womb.
Banner’s new protocol, which emphasizes continuous mother-baby bonding, shorter hospital stays and reduced drug intervention, could be important to other providers in Arizona and around the country as the number of newborns exposed to opioids in utero continues to climb.
The key to the new philosophy is that good parenting is better than any other intervention.
But helping people with substance use disorders become better parents is not something that’s completed in one simple step.
At Banner, it included a culture change. Medical providers from multiple disciplines including social workers, physicians and nurses are now trained to view drug use during pregnancy as a health issue, not a moral failure.
Part of the training includes helping staff members understand the disease process of addiction, and that factors like unresolved trauma and untreated mental illness predispose people to high risk of drug misuse.
Most importantly, staff members learn that in order to get optimal results, the moms of drug-exposed babies need to feel welcome and included.
Maternal bonding and other nonpharmacological interventions, some experts believe, are worth far more in easing withdrawal symptoms for opioid-exposed newborns than any other care the baby receives.
Rather than giving the newborns the standard of morphine every three hours for withdrawal, hospital staff encourage other therapies they refer to as “eat-sleep-console.”
The mother “trusts herself and she trusts us. It is collaborative,” said Lisa Grisham, who is the hospital’s neonatal nurse practitioner supervisor.
“Understanding addiction and seeing the mom and family here, willing to take care of the babies, has been a big eye-opener, I think, for a bunch of our staff.”
Ideally, Grisham said, engendering trust will change parental behavior and keep more moms with their babies.
Historically, parents of opioid-exposed newborns at the local Banner hospital have stayed away from the neonatal intensive care unit, or NICU, Grisham said. About 25 to 30 opioid-exposed babies are born at the hospital per year.
“They feel horrible about what they’ve done to their baby,” she said. “It’s easier to stay home and stay comfortable in your home than to show up and have someone judge you.”
Yale model
Since Banner is an academic medical center, one component to maintaining a good relationship with the parents of drug-exposed babies is ensuring the hospital does follow-up to gather much-needed data, said Dr. M.Y. Bader, a pediatrician and attending neonatologist at Banner-University Medical Center Tucson.
Bader is also medical director of the hospital’s new Family Centered NAS Care Program. NAS stands for neonatal abstinence syndrome. When babies have been exposed to narcotic drugs in utero, it often leads to NAS, where the infant suffers withdrawal symptoms several days after birth.
NAS is primarily associated with opioid use during pregnancy. In Arizona, the rate of NAS babies more than doubled between 2008 and 2013, when there were 645 opioid-exposed babies born statewide. Bader estimates the annual number in Arizona is now between 700 and 800.
“As neonatologists we used to measure treatment success by the type and amount of medication used, and the average length of stay in the hospital,” he said. “We are now more interested in knowing how many of these babies will be discharged home with their parents.”
Researchers also want to track the development of NAS babies. Right now, their outcomes are not well understood.
The Banner program is built on a model that originated at Yale University.
Grisham, Bader and Banner NICU nurse developmental specialist Becky Coykendall traveled to Yale in February to learn about the program and study the feasibility of adopting it from Yale pediatrician Dr. Matthew Grossman.
In June, Grossman and his colleagues published a study of the approach in the Journal Pediatrics that looked at 287 infants exposed to methadone in utero both before and after the new approach.
The research concluded interventions that focused on nonpharmacologic therapies reduced hospital stays from 22 to six days, cut costs, and no adverse events were reported.
Withdrawal
NAS babies are hospitalized for on average 22 days at a cost of $45,000 to $90,000 per baby, national data shows. Hospital costs for an average non-NAS newborn are about $3,500.
Withdrawal symptoms for NAS babies are similar to what an adult would experience and can include uncontrollable crying, tremors, repetitive yawning, gastrointestinal issues and sleep problems. They can also have headaches, muscle and bone pain.
Babies get withdrawal from exposure to heroin and prescription painkillers like Oxycontin, Vicodin and Dilaudid. Exposure to methadone, Subutex and Suboxone, which are used to treat addiction by taking away cravings, can also lead to NAS.
In Arizona, as of Friday, 141 babies suspected to have NAS had been born since June 15, which is when the state began collecting opioid-related data in real time.
The data collection began after Gov. Doug Ducey declared a statewide emergency due to the state’s number of opioid overdose deaths — at least two per day last year. Since June 15, the Arizona rate has been nearly four suspected deaths daily.
The Tucson academic center is the first location in Banner’s system of hospitals in six states to adopt the Family Centered NAS Care program. But it’s expected to expand to other Banner sites owned by the Phoenix-based company, Bader said.
There are challenges to the program. Ideally moms are identified early, before they give birth. But many women won’t admit they are using drugs during pregnancy because they are afraid of losing custody of their babies.
Moms must also be with their babies around the clock during the baby’s hospitalization, and not every mom agrees. They are encouraged to have family members at the hospital, too.
“The baby is not going to stop withdrawing when they leave the hospital,” Grisham said.
“Nesting” room
Rangel and her son, Alexander Ainza, who was born June 24, were the first mother and baby to try out Banner’s new program. One of the reasons is that Rangel was committed to getting better and had family members willing to help.
The NICU staff helped Rangel enroll in Medicaid and stayed in contact with her before and after she gave birth.
Arizona Department of Health Services data shows a majority of the NAS babies’ costs are covered by Medicaid, a government insurance program for low-income people. The state’s Medicaid program is called AHCCCS, the Arizona Health Care Cost Containment System.
After Rangel gave birth, she and Alexander stayed in their own private “nesting” room. She left the hospital only to get her methadone doses.
Rangel and Alexander’s total hospital stay was 11 days — half the national average.
Since Alexander’s birth, three other moms have given birth through the Banner program. Each stayed in the hospital just five days.
“Always high”
Rangel, a Tucson native, was prescribed opioid painkillers for chronic back pain at a local clinic and then became dependent on them. She turned to smoking black tar heroin when she could no longer get a prescription. The heroin was cheaper than buying pills on the street, though at $40 per day it devastated her bank account.
She went through the savings she’d been building since age 11 with jobs at a swap meet, fast-food restaurants, a nursing home and housecleaning.
“I got hooked pretty quickly. I was always high,” she said.
Banner’s old way of handling adverse NAS symptoms like crying and tremors was morphine or clonidine. The dose was determined by something called the Finnegan scoring system that assesses withdrawal.
Under the Finnegan scoring method it is not unusual for NAS babies to have eight doses of morphine per day. The protocol also calls for slowly weaning the babies off the morphine before they are discharged.
By comparison, Alexander received just three doses of morphine during his entire hospitalization, and the next three babies treated in the Banner program did not receive any doses at all. That’s because the new program calls for giving morphine as needed only if the baby cannot be soothed or calmed or consoled by the mom and the staff.
All four of the babies treated through the program have gone home with one or both parents under close supervision by the state’s Department of Child Safety, Grisham said.
Child custody
Hospital officials work with the Department of Child Safety, which enrolled Rangel and Alexander in its own program called SENSE — Substance Exposed Newborn Safe Environment. The program includes an intensive regimen of home visits and in-home parent education.
SENSE started in 2006 but has been active in Pima County for less than a year.
The aim of SENSE is keeping families together, said Sue Smith, the prevention administrator at DCS. Opioid-exposed newborns are at a heightened risk for child abuse and neglect, Smith said.
DCS officials don’t have data on how many NAS babies are removed from their parents’ custody.
The agency does track the number of substance-exposed newborns reported to its child abuse hotline — it was 356 statewide in July, and 4,059 total in 2016. The agency does not track by specific substance, though that could change in the future, Smith said.
At the root of the SENSE program is engaging with parents, “side-by-side,” and carefully listening to what they have to say.
“My philosophy is that if you walk in and your body language and tone of voice say you are judging them, they are going to shut down and not want to engage,” said Theresa Lindberg, the behavioral health clinical director at Casa de los Niños, a nonprofit for families in crisis and pilot contractor for the SENSE program in Pima County.
“We are not saying drug use is OK. But we want them to know, ‘We hear you,’” she said. “We want them to improve and to do the things they need to do to be better and improve their family so that DCS doesn’t have to be involved.”
Emerging field
Treating NAS babies is an emerging field and there are different ways hospitals are handling it, said Pat Brown, director of the women’s and children’s department at Tucson Medical Center, which is Tucson’s largest hospital and also has the most births of any hospital in the city — about 5,300 per year.
Thirty-four NAS babies had been born at TMC this year as of Aug. 15.
TMC may use the Yale model at some point, though not right now, Brown said. For one thing, the hospital does not have any nesting rooms. She also noted that not all moms are willing to stay with their babies 24 hours per day.
“There’s good and bad about it. The kids go cold turkey,” Brown said of the Yale model. “Once they are finished with their withdrawals they have the same outcome. What you really need to work on is the environment when they go home.”
TMC has its own program to treat the NAS population. Since April 2016 the hospital has had a designated nursery area for NAS babies, where mothers and families can speak freely without fear of being judged, Brown said, adding that the NAS staff also take a “no judgment” approach.
And TMC has a partnership with CODAC Behavioral Health Services designed to help parents and their NAS babies stay together. The hospital is trying other therapies, too, including infant massage and aromatherapy, Brown said.
“We are open to anything that would be helpful,” Brown said.
State health department director Dr. Cara Christ says that with the new opioid data collection, the state may in time be able to identify trends and best practices to better treat NAS babies.
State officials are also looking for better ways to prevent women of childbearing age from using opioids.
Tremors
On a recent Tuesday, Rangel was at the home of Alexander’s paternal grandmother, Margarita Ainza. DCS has told Rangel that she must be under 24-hour supervision of at least one approved family member. Rangel hopes to one day be able to have her baby without family supervision, but that will be up to DCS officials, she said.
Rangel was terrified when Alexander was born. He shook and cried, had sweats, terrible diarrhea and wouldn’t eat.
“He’s an innocent baby and he suffered because of me,” she said recently.
“I know I am not going to drop dirty. I am never going back to that.”
For now Alexander’s father is not involved in his life, though his family is helping Rangel. She sees herself completing the hours she needs to become a certified nursing assistant, and eventually working and taking care of Alexander on her own.
She still has work to do, and finds parenting both difficult and stressful. But so far she is staying in touch with Grisham and the other hospital staff, is responsive to parent education, her family has been diligent about helping, and she’s been following the program.
“Alexander is the only thing that made me change,” she said. “He saved me.”
