Pregnant with her second child, Clarissa Collins was at her methadone clinic when a woman walked in with a box of doughnuts and a baby doll.
The woman, Tara Sundem, was partway through a five-year effort to open Hushabye Nursery and launch a novel family-focused program that would treat substance-exposed infants and offer care and support to their caregivers.
Hushabye Nursery recently celebrated one year in its current care facility in Phoenix and Collins now works there as a peer support specialist, helping others in recovery.
The center houses a 12-room inpatient nursery for infants suffering from neonatal abstinence syndrome – newborns experiencing withdrawal from opioids they were exposed to in the womb, such as heroin and prescription painkillers.
But on that day in 2019, Collins begrudgingly attended Sundem’s support group for pregnant women with opioid use disorder. By the second group meeting, she decided to come back every week.
“I looked forward to it. I wanted to see the other girls; I wanted to hear their stories. I wanted to meet the baby,” Collins said. “And we became this little family. We became very close friends.”
As the opioid epidemic worsens nationwide, neonatal abstinence syndrome (NAS) cases are increasing, too. Nationally, the number of babies born with the condition increased 82% from 2010 to 2017, according to the Centers for Disease Control and Prevention.
The national trend in NAS cases holds true in Arizona and has worsened since the Covid pandemic began. Arizona’s NAS rate in 2020 was 9.1 per 1,000 newborn hospitalizations, up from 5.67 per 1,000 in 2015, according to Arizona Department of Health Services vital statistics reports. In 2010, that figure was 2.65 per 1,000.
Some of the increase can be attributed to better reporting and other factors, not the opioid epidemic itself, said Sara Rumann, with the department’s Bureau of Women’s and Children’s Health.
“But we can say overall the general trend is that it has increased over the last 10 years,” Rumann said.
Symptoms of NAS can include a high-pitched cry, vomiting, diarrhea, trembling, seizures, stiff limbs and trouble sleeping, eating and breathing, according to the department. The babies experience a withdrawal syndrome, not an addiction.
Collins had her first daughter in 2012, but started using heroin shortly thereafter. The Arizona Department of Child Safety got involved, and Collins ended up relinquishing her parental rights. Her daughter now lives with family in Louisiana.
“I had gotten strung out right after she was born; I had no history of addiction prior,” Collins said. “But one thing led to another, and a lot of it was I was desperate for my friends. I was 17. I had just had a baby. I wanted my friends back, so I did whatever they were doing.”
This time would be different.
Sobriety was part of that, and so was the Hushabye Opioid Pregnancy Preparation and Empowerment (HOPPE) program. Collins still has her green HOPPE binder, which she calls the bible, that helped her prepare for her baby’s arrival, gather information for the DCS investigation and document her classes.
Medication-assisted treatment (MAT) uses medications like methadone or buprenorphine in combination with counseling and therapy to treat opioid-use disorder. Hushabye staff recognize MAT as the “gold standard” of care, Sundem said. It’s recommended for pregnant women with opioid-use disorder because it’s often unsafe for women to completely stop taking opioids while pregnant. The change can trigger a miscarriage, preterm labor or fetal distress.
But because the medications used are opioids, Department of Child Safety is still contacted because the baby is still substance exposed.
“Whether it be prescribed or unprescribed, that’s for DCS to figure out, but it has to be reported to the state,” Collins said.
The increase in NAS cases is something Sundem, a neonatal nurse practitioner, saw firsthand. She has spent most of her nearly 30-year nursing career in neonatal intensive care units. About eight years ago, she said, something changed.
“We just started seeing this surge of babies coming in and withdrawing,” Sundem said. “When we started seeing that influx, I was like, ‘What do we do?’”
About six years ago, Kelly Woody, who co-founded Hushabye with Sundem, had the answer. The fellow neonatal nurse practitioner had watched a segment on the “Today” show about Lily’s Place, a first-of-its-kind Neonatal Abstinence Syndrome center in West Virginia.
Woody told Sundem, “This is what we’re going to do.”
“I’m a believer, and I prayed on it and prayed on it and prayed on it, and went, ‘OK, I guess I’m supposed to do this,’” Sundem said.
They spent the next five years developing their care model and trying to find funding.
“I begged, I borrowed, I asked favors,” Sundem said.
Hushabye’s current facility opened in November 2020. Hushabye is licensed with the state health department and is accredited through the Commission on Accreditation of Rehabilitation Facilities International.
The nursery’s approach is family-centric, with programs for women prenatal and postpartum.
Postpartum care for mothers is important because the relapse rate in the first six months is high – nearly 80%. Alicia Allen, an associate professor at the University of Arizona’s Department of Family and Community Medicine, studies substance use in women. She said while postpartum is an especially vulnerable time, it’s also a good time for health care professionals to interact with people who are struggling with substance use.
“During pregnancy, there’s a lot more motivation, there’s a lot more support and there’s a lot more access to health care, so that’s a perfect place to start,” Allen said.
With in-patient infants, Hushabye uses the Eat, Sleep, Console method, a newer approach to treating NAS that prioritizes the comfort of the baby and non-pharmacologic treatments, shifting away from scheduled postnatal opioid treatment to “as needed” dosing. Parents stay with their babies during their time at the nursery.
“Our patient in-patient is that baby, but that baby’s therapy is their family,” Sundem said.
The Eat, Sleep, Console approach is effective. Babies withdrawing at Hushabye stay an average of about 6 to 7 days. The national average stay for a baby with NAS in a neonatal intensive care unit was 11 days in 2018.
Banner University Medical Center Tucson was the first Arizona hospital to learn about Eat, Sleep, Console, a model that got its start at Yale University through the research of pediatrician Dr. Matthew Grossman.
“What we’ve been doing for the last 40 years is not working, and everybody’s cranky. Not only the babies – the families are cranky; the nurses are cranky,” Lisa Grisham, director of Banner’s Family Centered NAS Care Program, said. “When you look back, we thought we were doing the best we could. And now we realize there’s a better way to do it.”
In addition to Hushabye, nine hospitals in Arizona use Eat, Sleep, Console for at least some of their NAS patients, depending on the individual situation.
At Hushabye, there are 12 private rooms where babies can withdraw in a dark environment and their families can stay 24/7. Usually, there are five or six babies at any one time, though Sundem said there was recently a span of three weeks where they were at capacity.
“We encourage (caregivers) to stay, even if they’re struggling. As long as that’s safe and they’re not dangerous, we want them to stay,” she said. “What they are doing for their baby just by being present in the room – they’re helping with the wiring of the brain, something that you and I can’t do.”
When a family comes to Hushabye, Sundem said staff meet them where they’re at — and connect them to resources for food, transportation and housing if needed. She said she thinks families stay in part because the staff are trauma-informed. They know that many people have experienced trauma, that trauma affects health and behavior and that it should be factored into how people are treated to avoid retraumatizing them.
If parents are able, staff help teach them how to care for their baby. With all families, Sundem said staff try to help them avoid shame or guilt by understanding that they have opioid use disorder, a medical condition, not some sort of moral failing.
Many of the parents, Sundem said, started taking an opioid after it was prescribed to them following something like an accident or a C-section and then developed a dependence. Three out of four women who use heroin were initially prescribed opiates.
“When you talk to families, it is to function – it’s not to get high,” Sundem said. “They literally say that they’re dope sick, that they use to get well.”
In an effort to reduce stigma against pregnant women with opioid-use disorder, the health department launched its campaign “Hope Heals” earlier this year, following a recommendation in the state’s Opioid Action Plan 2.0. Rumann worked on the campaign, as did Jacqueline Kurth, the office chief for injury and violence prevention in the department’s Bureau of Chronic Disease and Health Promotion.
“There’s a lot of stigma that is a barrier for people seeking help for mental health disorders and for substance use disorders, in particular for pregnant and parenting women,” Kurth said.
On the outpatient side, Hushabye has a licensed marriage and family therapist and two case managers. One case manager focuses specifically on helping families navigate interactions with the Arizona Department of Child Safety. Sometimes, Sundem said, families are so stressed that they don’t really hear what DCS is saying they need to do.
“Sometimes it’s because they’re not healthy, but sometimes it’s just because it’s so stressful,” Sundem said. “And sometimes, they speak a completely different language.”
That was Collins’ experience after the birth of her first child.
“I had no clue what the hell I was doing back then,” she said. “I went through DCS; I went to court; I did all of that. I tried going to treatment, but I had no clue what I was doing. I was physically present, but I had no clue what was going on.”
Collins and the other peer support person have both been through the Hushabye program. Collins’ daughter recently turned 2. The other peer support’s baby will be 1 in February.
The facility has two nurses on duty around-the-clock, even if there’s only one baby, to be able to resuscitate if needed. While not a hospital, Hushabye provides the care a baby with NAS needs. If something goes wrong, Banner – University Medical Center Phoenix, Valleywise Health Medical Center and Phoenix Children’s Hospital are all a 5- to 7-minute drive from the nursery.
Out of the more than 180 babies treated at Hushabye, only three have been sent back to the hospital for additional treatment, Sundem said.
For Collins, working as peer support for others in recovery has helped her, too. She still attends groups and lives with her daughter and her fiancé, who is also in recovery. She knows what the women at Hushabye are experiencing because she’s been through it.
“It’s healing to me,” she said. “Because it’s like I’m almost able to close a chapter in my past knowing that, OK, I got somebody somewhere farther than I could go.”