Every 25 seconds, a baby is born with neonatal abstinence syndrome (NAS) in the United States.
NAS is a constellation of symptoms that the majority of infants exposed to opioids in utero develop in their first days of life outside the womb while going through withdrawal. They may vomit, sweat, shake, develop fevers and diarrhea. Many of these newborns are hyper-stimulated and have difficulty feeding. Often, they lie stiff as boards.
Suzy Ricker is a social worker in the NICU at Primary Children's Hospital in Salt Lake City where there's often at least one baby with NAS recovering.
“It's tough, it's tough for moms,” she said. “There's a guilt, an immediate guilt, that comes from 'Why is my baby crying so much? Why is my baby kind of jittery, shaky, clenching?' all of the signs and the things that are looked for in babies that are withdrawing. It's a hard thing to see I think for everybody, but the medical team does so good at keeping babies comfortable throughout this withdrawal process.”
That's because since 2013 her colleague neonatologist Camille Fung has worked with a team practitioners in the Utah Women and Newborns Quality Collaborative to develop a model of care to standardize and improve the care babies with NAS receive. It may also dramatically reduce the cost of care for each infant by tens of thousands of dollars.
“It was really physicians from both Intermountain Healthcare and University of Utah Healthcare,” Fung said. “We literally put our heads together. We had many, many iterations but came up with something that everybody could agree on, and then we adopted them in the nurseries of both healthcare systems. People practice based on what they've been taught, and so there definitely was a big range in how people managed these babies—even the medications used to treat them it varied a lot. So now we've changed everything so there's a uniform way of doing it.”
When pregnant women check in to the hospital they are asked about their drug use and infants whose moms are taking opioids, both prescribed and illicit forms. are flagged as being at risk for going into withdrawal. After delivery, a piece of the umbilical cord is taken for toxicology testing and hospital staff use a specialized scoring tool to assess infant health. If babies develop moderate-severe symptoms they are treated with drugs like morphine to wean them off opioids. However, the care process model emphasizes non-pharmacological interventions to reduce withdrawal symptoms too. Ideally, mom is a part of the healing process.
“Part of our care process model now is to try and do it better with the non-pharmacological interventions so that we really decrease the amount of drugs that we further give these babies,” said Fung. “The ideal situation would be a mom who can actually stay by the bedside, hold these babies, breastfeed these babies. Just learn all of the maneuvers that they can learn, ways to calm the baby without needing a medication.”
In Utah, the number of babies with NAS has nearly tripled in the last decade and Dr. Fung believes figures may be grossly under reported. She has worked with the Utah Department of Health to improve surveillance methods and make NAS a reportable condition at birth. However, not all newborns exposed to opioids in the womb will develop NAS, and it's difficult to predict which ones will experience withdrawal. But it's not uncommon for babies with NAS to spend more than two weeks in the hospital.
For social worker Suzy Ricker, this time can be critical for getting moms on the path to treatment or connected to services.
“That's a really big opportunity for us to step in and say 'We've got three weeks, let's get you in a program, let's get you in an inpatient program that allows baby to discharge to you,” she said. “There are a couple of facilities in Salt Lake that allow for that, which is great. Because it continues to allow these moms to be a mom through their treatment. That's probably the biggest challenge is places being available at the time that mom needs it.”
If a bed isn't available in treatment facilities for families, social workers work with a mom to find daily supports until one does. And while some family-centered treatment options exist along the Wasatch Front there are far less available to women in rural regions. This can leave moms who want treatment for opioid addiction without a good option.
“The thriving of a baby always goes hand in hand with a mom being present,” Ricker said. “I think it maybe is even more important for the moms who are feeling the guilt to feel the love that the baby has for them. And that love is not replaced by anybody else. The nurse can't just step in and all of a sudden be this baby's mom. Baby knows that mom is mom. And I think it's important for mom to feel that as a motivator to stay on the path she's on if she's reaching for the clean path and has been on that path. If she has this desire to change, which often times it's, 'Gosh I have this baby and I am in love with this baby and this is what I want to do.' So the more the mom's present the continual reminder of 'This is why. This is why.'”
These babies are among the tiniest victims of the opioid epidemic here in Utah. But the trickle down effect of this crisis isn't limited to hospital delivery rooms. It can also be seen in the bloated case files of the Department of Child and Family Services. This year, the number of children in foster care swelled to upwards of 2,800.
“We've been keeping track of the data for a long time,” said. Tanya Abornoz, foster care program administrator for the Utah Office of DCFS. “We typically hover between 2,600 and 2,800 kids in care. So 2,800 is about the threshold that we watch very closely. What we've seen over the past two years is that we've gone over 2,800 and have not been able to decrease that number. In fact, we were very close to reaching 2,900, which we've never seen those types of numbers before in the whole history of child welfare in Utah. That has impact on services in the community, for schools, the burden is all the way across the entire community. Child welfare is not contained in a bubble.”
In the last year, the agency has seen a 15 percent rise in substance abuse as a contributing factor for children coming in to care. But Utah has had an opioid problem for over a decade. One reason DCFS may be seeing the spike now because it takes a while for situations to get so bad that others intervene. Albornoz says that the key to helping these families is for friends and family to stick around when it's hard.
“Understanding the effects of addiction and that relapse is a part of the addiction cycle, and that it's expected,” she said. “So helping us put safety nets in place for when a relapse happens. That there's somebody there or willing to help and stick with the parent and not just give up on them. For me, the key to these cases is the relationships, the formal and informal supports that are around these families. It's the isolation that typically drives them to use.”
The opioid epidemic is not going to go away overnight. DCFS is looking for people to become foster parents and help Utah's kids in need.
This series is brought to you in part by the Association for Utah Community Health, providing training and technical assistance to health centers and affiliates across Utah. More information available here.