Contact: Emily Greendonner
Hundreds of caregivers from two hospitals unite to support babies born at the edge of viability
MADISON, Wis. – Seven years ago, Dr. Claudette Onyelobi experienced a loss that would change the course of her career.
After a baby was born at 22 weeks gestation, she placed the infant in the mother’s arms and told the family there were no medical interventions available. The baby, born at the very edge of viability, died shortly after birth.
“I had to stay until the baby took its last breath and tell the mother that her child was no longer alive. It was the worst day of my professional career, and it changed me forever,” Onyelobi said. “I promised myself I would never again wrap a newborn in a blanket, hand the infant back to the family, and say there was nothing we could do. It was then that I realized I had to partner with other clinicians to give these tiny humans a fighting chance.”
When Onyelobi, a UW Health Kids neonatologist who cares for patients in the Level IV NICU at American Family Children’s Hospital and the Level III NICU at UnityPoint Health–Meriter Hospital, made that promise, it led to the UW Health Kids and UPH-Meriter Tiny Baby Initiative. Building on the organizations’ longstanding Small Baby Program for infants born between 23 and 28 weeks’ gestation, the initiative extends specialized care for “tiny babies” born sometimes as early as 21 or 22 weeks.
The initiative brings together a specialized team of physicians, nurses, respiratory therapists, dietitians, pharmacists, and physical, occupational, and speech therapists to care for the tiniest babies. The Tiny Baby Initiative has learned from leading experts worldwide, secured specialized equipment, developed clinical care guidelines, and trained multidisciplinary teams. Some of the equipment used for infants born as early as 21 or 22 weeks is extraordinarily small, including breathing tubes no wider than a coffee stir stick.
Onyelobi, who also directs the Small Baby Program at American Family Children’s Hospital and UPH-Meriter, has spent the past seven years working with colleagues across both hospitals to advance care for extremely premature infants as the limits of viability have shifted from about 24 weeks decades ago to as early as 21 or 22 weeks today.
Most tiny babies are delivered at UPH-Meriter, or transferred there soon after birth, where UW Health Kids physicians, certified nurse midwives, clinical nurse specialists and neonatal nurse practitioners care for families in labor and delivery and the NICU. Depending on their medical needs, infants may be discharged from the UPH-Meriter NICU or transferred to American Family Children’s Hospital for advanced care. Hospital stays often last several months and can extend up to a year.
To date, UW Health Kids and UPH-Meriter have provided active resuscitation and intensive care for about a dozen infants born at 22 weeks gestation. While not all survived, several have, offering hope to families facing the challenges of extreme prematurity, Onyelobi said.
“Every life we save matters, and every family deserves the chance to see what’s possible,” said Onyelobi, who is also an associate professor of pediatrics at the University of Wisconsin School of Medicine and Public Health.
The Tiny Baby Initiative is considered especially important in Wisconsin, where Black infants experience disproportionately higher rates of prematurity and infant mortality. Black mothers have the state’s highest rates of preterm birth, and approximately 10% of babies born in Wisconsin are premature, according to the Wisconsin Department of Health Services.
“When a family is told their baby may be born much earlier than expected, they need more than statistics; they need options,” Onyelobi said.
UW Health Kids and UPH-Meriter is among just 61 hospitals worldwide participating in the International Tiny Baby Collaborative, a network dedicated to improving outcomes for infants born at or before 23 weeks’ gestation.
Patients from across Wisconsin and neighboring states are referred to UW Health Kids for its expertise in routinely resuscitating and caring for babies born as early as 22 weeks, according to Dr. Cynthia Ortinau, division chief of Neonatology and Newborn Nursery at the UW School of Medicine and Public Health.
“What began as a personal promise has become a program changing lives across Wisconsin and the region,” she said. “It’s made possible by dedicated teams at American Family Children’s Hospital and UPH-Meriter working together to give babies and families hope.”
One family grateful for that hope is a Fitchburg family whose daughter, Ayah Chikoka, was born at 22 weeks and three days gestation, weighing just 15.8 ounces. After spending 48 days in the NICU at UPH-Meriter and another 7.5 months at American Family Children’s Hospital, she was discharged home on Dec. 9, 2023. Today, Ayah, almost 4, is thriving.
“We thought we were going to have to say goodbye to our daughter,” said her mother, Masompe Chisenga. “Bringing her home felt like a miracle.”
Stories like Ayah’s inspire the teams behind the initiative.
“Seven years ago, we couldn’t send these tiny babies home with their families,” Onyelobi said. “Ayah and every Tiny Baby Initiative graduate are proof of what’s possible when a dedicated team comes together to give these babies a chance at life.”
