The symptoms start early in life for these infants: tremors, seizures, eating problems and excessive crying. Left unchecked, these hundreds of newborns in Spokane face a tough future of developmental delays, behavioral issues and struggles to bond.
Maddie’s Place is trying to help.
In its first 15 months, the nonprofit cared for 61 infants who were exposed to drugs such as fentanyl in the womb and were then born addicted and in withdrawal. At the same time, Maddie’s Place caregivers learned of another 63 babies in Spokane who didn’t get into their arms during the same period.
Combined, that’s more than triple the number expected based on a national prevalence estimate of six births per 1,000 hospital stays a year for infants with what is called “neonatal abstinence syndrome,” Maddie’s Place CEO Shaun Cross said.
In Spokane, that would be 36 newborns.
While seeking Medicaid funding for Maddie’s Place, its leaders think the number of affected babies might be in the hundreds each year. A new study will track results among the facility’s infants and moms, along with the question of how many infants might need such treatment in Spokane County.
“We have about 6,000 live births a year in Spokane County, and we think the estimate of 36 babies – that’s way, way low,” Cross said. “We know that’s off by 300% just by what we’ve encountered.”
Medicaid funding isn’t available for Maddie’s Place because the state’s “medical necessity” care for drug-exposed newborns is defined as ending when a baby is discharged from a hospital, Cross said.
Maddie’s Place was founded by Tricia Hughes, a WSU College of Nursing graduate who later took dozens of babies suffering from drug withdrawal into her home. The nursery is named after one of those babies, who was delivered to Hughes at 3 weeks old in 2008 with severe opiate withdrawal symptoms.
Maddie was adopted by the Hughes family. Her story inspired Hughes to create a facility to provide specialized, nurturing care for a growing number of drug-exposed newborns. Hughes is clinical director at Maddie’s Place.
The nonprofit uses a nonpharmaceutical model in a quiet, low-stimulus setting as caregivers use frequent holding, comforting methods and careful feeding. One of four transitional care nurseries nationwide, it differs from a hospital-type environment that typically gives morphine to infants undergoing withdrawal.
Under a state pilot program, Washington State University researchers will study the health outcomes at Maddie’s Place, while examining the issue of determining how many drug-exposed babies are born in Spokane County.
The WSU study is funded by a $190,000 grant from the Washington Health Care Authority, part of a larger state Legislature package approved last May. That allocated $5.5 million from the state’s opioid settlement funds – a majority toward Maddie’s Place operations through June 30, 2025 – until a funding source is found. The facility gained $4.5 million in private donations.
Through the pilot, Cross said he hopes some issues are resolved, such as calculating better Spokane numbers, studying transitional care effects and gaining Medicaid funding.
“You’ll see from the language at the end of the bill, that the primary purpose of our pilot project and study is to get the services we provide to be covered under the state’s Medicaid plan,” Cross said.
None of Maddie’s Place’s patients is covered by private insurance.
“What we are arguing is that medical necessity needs to end once the babies’ withdrawal ends, and they’ve been discharged from facilities like Maddie’s Place,” Cross said. “The average length of stay here is somewhere around 45 or 50 days. We’ve had babies here for only seven days. We’ve had babies here for as long as 110 days.
“Many of the babies are suffering from polysubstance withdrawal. Probably 80% or so of our babies are withdrawing from fentanyl, but the fentanyl may have been mixed into meth or heroin. There may have been use of alcohol, or multiple things.”
Cross said the goal is finding a “window of tolerance” so that mom and baby are both functioning enough to bond.
“The theory is that if you don’t have that bonding and attachment really early on in the first 90 days of the infant’s life, then it’s going to result in trust issues, relationship issues and bonding issues downstream for the rest of their lives,” he said.
Maddie’s Place includes moms – and some dads – if in treatment or willing to go into treatment to be at the facility with newborns. Cross said 42 parents – mostly moms – have stayed at its facility since opening in October 2022 . The facility is licensed to treat up to 16 infants for 24-hour care. It has rooms for up to 13 parents.
Starting with two employees, the site now has 79 on staff, including a medical director, clinical director, 35 infant care specialists and 26 nurses. It has 40 trained volunteers.
WSU researchers will look at how that care has affected the babies and moms, said Celestina Barbosa-Leiker, a WSU College of Nursing professor.
She said researchers will examine psychological and social well-being, attachment between mom and baby, overall behavioral health and infants’ developmental milestones. It will evaluate health data from Maddie’s Place medical records of babies and moms, while researchers do interviews with parents and caregivers.
Also, they will explore Spokane County’s prevalence of affected newborns by talking to Maddie’s Place leaders and to area providers, such as OB-GYNs and caregivers in neonatal intensive care units.
“Nationwide, we know that there is an issue with the reporting of the prevalence of neonatal abstinence syndrome,” she said. “There are a lot of different codes that could be used, or it might end up in chart notes and not classified.”
Barbosa-Leiker said Maddie’s Place staff “need to have better numbers, more accurate and valid numbers.”
“We hypothesize that we’re undercounting, where we don’t have a full grasp of the impact of neonatal abstinence syndrome at this time, so what we’re really hoping to add to the science here is what are the barriers from the health care providers’ point of view and those serving babies?” she said. “What could we potentially do as solutions?”
Cross also is pressing for a national study. He said other reasons why estimates are low are that moms might not admit to drug use during pregnancy. Sometimes symptoms don’t show for a couple of weeks after birth. From certain drugs, they may appear to be only sleepy.
“We have a national drug crisis that has been escalating since the 1960s, and it’s just gotten worse with each new wave of compounds, new drugs and new synthetic drugs,” Cross said. “Fentanyl is just taking it to an extreme.”