Her survival reflects care from a specialized program shared by American Family Children’s Hospital and UnityPoint Health-Meriter in Madison. Called Small Baby Care, it is equipped to treat infants born as early as 22 weeks, with specially trained staff and medical equipment sized for the smallest newborns.

Ayah’s mother, Masompe Chisenga, said she had never heard of babies surviving birth that early. When doctors told her delivery was inevitable, they explained that they could provide intensive resuscitation, but could not promise Ayah would live or avoid serious disabilities. Chisenga and her husband chose to have doctors try to save their daughter.

After 28 hours of labor, Ayah was born at Meriter and taken to its neonatal intensive care unit. Her mother waited 21 days before she could hold her. Ayah spent 48 days at Meriter, then transferred to American Family Children’s Hospital, where she remained for another seven and a half months.

Dr. Claudette Onyelobi, a UW Health Kids neonatologist who directs Small Baby Care at the two hospitals, said the program’s capacity depends on more than advanced equipment. Caring for infants born this early requires a team trained to manage their fragile lungs, skin and other underdeveloped systems. The hospitals use breathing tubes and other devices made for extremely small patients.

American Family Children’s Hospital opened its Level IV neonatal intensive care unit in 2014, the highest level of NICU care. Meriter has a 42-bed Level III unit, where babies are generally treated before they are stable enough to transfer to the children’s hospital’s 26-bed unit. Wisconsin has two Level IV NICUs, according to the account of the program.

Onyelobi said a case early in her career shaped her commitment to caring for infants born at the edge of viability. In 2018, while training at a hospital without the capabilities to provide life-saving treatment to a baby born at 22 weeks, she had to tell the family the child would not receive resuscitation. She recalled crying after leaving the room and deciding she would work to give other families a different option.

Medical practices have changed substantially in recent decades. Before some extremely premature births, clinicians may give the pregnant patient steroids, magnesium sulfate and antibiotics to improve the infant’s chances. Surfactant, a treatment developed for premature infants whose lungs have not produced enough of a substance that helps them breathe, has also improved care.

But access to specialized treatment exists alongside stark disparities in premature birth. Nationally, one in 10 babies was born preterm in 2024, compared with nearly one in six Black infants. In Wisconsin, 15.6% of Black infants were born preterm that year, versus 9.3% of white infants, according to National Center for Health Statistics data cited in the report.

Preterm-related causes account for more than 35% of infant deaths in the United States. The figure is about 15% for white infants; the share among Black infants is nearly three times as high. Onyelobi said the disparities are heartbreaking, and that her work is focused on helping infants who arrive before those broader risks can be eliminated.

Ayah went home in December 2023, still using supplemental oxygen and an oxygen monitor. She needed oxygen until she was 2. Doctors had once been unsure whether she would walk; now, her mother says, she loves to dance.

For Onyelobi, sending a child home is an emotional milestone. Ayah is the longest-surviving infant in the program, and her family’s experience shows what specialized neonatal care can make possible for babies born exceptionally early.