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This story is part of the Cap Times series Deadly Divide, investigating Wisconsin’s ongoing Black infant mortality crisis. Erin McGroarty reported this story as a USC Annenberg Center for Health Journalism 2026 National Fellow.
On the night her daughter was born, Masompe Chisenga named her baby Ayah, which means miracle.
Ayah’s life began far too early. Born at just 22 weeks and 3 days and weighing less than a pound, the newborn fit in her mother’s palm.
The first 10 months of Ayah’s life would be measured in the quiet hum of a neonatal intensive care unit, the beep of medical machinery, the whir of supplemental oxygen and the prayers of her mother and father.
That Ayah is now 3 1/2 years old is a testament to her name.
It’s also a testament, her mother says, to the groundbreaking care she received at American Family Children’s Hospital and UnityPoint Health-Meriter in Madison through a program called Small Baby Care, designed to save the tiniest infants born as early as five months into a pregnancy.
‘Lost for words’
Chisenga never expected to deliver her daughter so early. She carried her first pregnancy to 39 weeks, delivering Ayah’s older brother, Munshya, through cesarean because he was breech, when a baby is situated feet-first in the uterus instead of the typical head-down presentation.
In Ayah’s case, “everyone was just lost for words because I was only five months pregnant,” Chisenga said. “I was lost and hopeless because at that point I had never heard of any possibility of babies being born that early.”
Doctors came to speak with Chisenga in her hospital room after it was realized she was fully dilated and delivery was inevitable. They explained two options for how to proceed: Chisenga could deliver her daughter and wait for the baby to die, or the doctors could intervene, provide advanced resuscitative care and try to save Ayah. Even with the second option, there would be no guarantee the little girl would survive or, if she did live, ever be able to walk or talk.
“At that moment, they were asking what I wanted to do, and I had no answer,” she said.
Chisenga spoke with her husband. The two decided they wanted the medical team to try to save their daughter’s life.
After 28 hours of labor, Chisenga delivered Ayah. The tiny child weighed 15.8 ounces, less than one-seventh the average size of a full-term newborn girl.
In the maternity ward at UnityPoint Health-Meriter Hospital, a team of neonatologists, nurses, advanced practitioners and specialists were waiting to give her a fighting chance.
“When Ayah was born, I was only allowed to see her for a second, and then they had to take her away and start the process of putting in a breathing tube to get her stabilized,” Chisenga said. “She was very tiny and she was very fragile.”
Ayah was quickly whisked away to the neonatal intensive care unit, or NICU. Chisenga said she felt like she couldn’t breathe wondering whether her child would survive her first day and night.
“For those 24 hours, we waited,” she said. “It was very difficult.”
A nurse helped Chisenga into a wheelchair and brought her next to her daughter’s incubator. The box was full of tubes and wires. Beneath it all, Ayah was fighting for her life.
It would be 21 days before Chisenga could hold her daughter.
‘Beacon of hope’
Babies born this early are so tiny and fragile that doctors and other providers have to handle them with the utmost care because every aspect of their body, even their skin, is underdeveloped.
They can’t breathe on their own. They can’t nurse. It isn’t even safe for them to open their eyes because their retinas are too sensitive for the intense therapeutic lights installed in incubators.
Prematurity is considered any delivery before 37 weeks gestation. A delivery between 33 and 37 weeks is considered late preterm, 29-33 weeks is considered moderately preterm, and extremely preterm is any baby born at 28 weeks or earlier.
In 2024, one in 10 babies in the United States were born preterm, according to the National Center for Health Statistics. For Black infants, that number is closer to one in six. In Wisconsin, about 9.3% of white infants were born preterm in 2024. Among Black infants, 15.6% were born preterm.
Preterm-related causes of death account for more than 35% of all infant deaths in the United States. For white infants, the percentage is lower, around 15%. The percentage of Black infants in the U.S. whose death can be attributed to being born too early and two small is nearly three times that.
At the center of Ayah’s care team was Dr. Claudette Onyelobi, a UW Health Kids neonatologist, associate professor of pediatrics at the University of Wisconsin School of Medicine and Public Health and the director of Small Baby Care at American Family Children’s Hospital and UnityPoint Health-Meriter.
“It breaks my heart,” Onyelobi said of the fact that she will statistically see more Black families in her NICU than those of any other race.
In a perfect world, she said, Black babies would not face such stark disparities in mortality and preterm birth. But until those risks can be eliminated, Onyelobi will work to save the ones who came too soon.
Onyelobi clearly remembers the moment she chose her specialty in neonatology, and it haunts her to this day.
Nearing the end of her clinical training in 2018, Onyelobi provided care for a family in Wisconsin who delivered their baby at 22 weeks. The hospital in which Onyelobi was practicing didn’t have the medical capabilities to provide life-saving interventions for a baby that small.
Onyelobi’s only option was to deliver the infant, wrap the baby in a blanket and advise the family that they would need to say goodbye.
“I held it together for as long as I could stay in that room, and then I stepped out of the room, and I cried all the way to my call room, and then I cried some more the rest of that night, and I cried a little bit more next week, and the week after that,” Onyelobi said. “I said to myself, ‘I am never in my life going to do that again.’”
A lot of doctors have these key moments, typically earlier in their career, when a particular case hits them especially hard and serves as inspiration for years to come.
“That was the personal experience for me. Maybe it’s not my own child, maybe it’s not a sister or a brother or this person who’s connected to my family, but that was enough for me,” Onyelobi said. “For those families who need me, I will be that beacon of hope.”
This was eight years ago. Since then, a lot has changed.
American Family Children’s Hospital opened its Level IV NICU in 2014, the most advanced ranking a neonatal intensive care unit can receive. Since 2018, Onyelobi has created, along with a team of other specialists, one of the most advanced neonatal programs in the country.
Neonatology is still considered a relatively new field of medicine, minted in the 1960s and ’70s. There are only about 5,000 neonatologists in the United States. By comparison, more than 34,000 cardiologists are practicing in the U.S.
One of a few
Just 850 neonatal programs in the country have capabilities to care for infants as young as 22 weeks gestation. Beyond capacity, these NICUs need specially trained staff and specialized equipment designed for the smallest of newborns: Breathing tubes the size of a coffee straw. A stethoscope the size of a quarter.
The collaborative program between UW Health and UnityPoint Health-Meriter is one of only a handful in the country that has all of the factors needed to care for the tiniest premature infants: the capacity, equipment and specially trained staff.
Premature babies born in the maternity ward at Meriter will typically be treated in the hospital’s 42-bed Level III NICU until they are stable enough to transfer to American Family Children’s Hospital’s 26-bed Level IV unit — one of only two Level IV NICUs in Wisconsin.
“We’ve had people from the University of Iowa and different places come and show us how it’s done, so that we can then hone our skill and figure it out,” Onyelobi said.
Babies born this early require extreme medical interventions before delivery even starts.
As soon as obstetricians realize they can no longer delay birth, the providers start giving the mom medications like steroids, magnesium sulfate and antibiotics to help improve the infant’s chances of survival.
These interventions have become part of the standard practice over only the last two or three decades, Onyelobi explained.
In the early 1990s, the medical field developed the ability to inject surfactant into a preterm baby’s lungs to mimic a type of protein that coats the inside of our lungs and helps us breathe.
Infants who are born this early have not naturally developed this lung coating yet, so the injections have been a game changer in helping extremely preterm infants breathe with still underdeveloped lungs.
These advancements, and the fact she was able to receive them in Madison, are part of why Ayah lived when so many babies born this early do not.
Ayah was born on the edges of viability, and it took a village for her to survive, Onyelobi recalled.
At this point of development, every breath and every hour make a difference.
The little girl spent 48 days in the NICU at Meriter before she was transferred to American Family Children’s Hospital, where she spent another 7 1/2 months.
Especially at the beginning of her life, many moments were touch and go.
Chisenga remembers times when she would receive a call from the hospital, letting her know her daughter had taken a turn and she needed to come right away, potentially to say goodbye.
“The first time I met Dr. Onyelobi at Meriter was a very difficult day,” Chisenga said. “I remember going in that day after getting a call saying I needed to go, and things weren’t looking good. And when I walked in, there were a few nurses and Dr. Onyelobi. She was there trying to figure out what would help Ayah’s situation stabilize because it was hard for her to breathe.”
Chisenga began to cry, preparing to lose her daughter. Onyelobi comforted her, Chisenga said, explained the situation and began using a breathing bag to help Ayah’s oxygen levels increase.
“I cried so much,” Chisenga said.
When she held Ayah for the first time, 21 days after giving birth, Chisenga said she was surrounded by doctors, specialists and nurses in case something went wrong. She couldn’t be alone with her daughter because of Ayah’s critical condition.
Chisenga would visit her daughter often, speaking to Ayah through the protective box of her incubator.
“I was telling her that no matter the circumstances, we loved her. We loved her so much,” Chisenga said. “We wanted her to be here, and we were happy that she was staying strong for us. No matter the circumstances, love was waiting for her at home. And she was strong and she was mighty.”
‘A good goodbye’
When Chisenga and her husband brought Ayah home, she still required supplemental oxygen and an oxygen monitor. The equipment was so sensitive the alarm would sound if Ayah moved her leg.
Chisenga said she was always on edge, grateful to have her daughter home with her, her husband and Ayah’s older brother, who was 2 at the time. But Chisenga said she was constantly terrified something would go wrong.
Now, as a 3-year-old, Ayah dances and skips around her living room. Even as a newborn, the little girl was eager to move.
“She kept wiggling, and the machines kept going off,” Chisenga said of when her daughter was brought home from the NICU.
Ayah required supplemental oxygen until she was 2 years old. Now, she loves to sing.
Doctors were unsure if Ayah would ever walk. Now, she loves to dance.
“I couldn’t be more proud,” Chisenga said as she watched her daughter make silly faces.
Ayah is the longest surviving infant of Onyelobi’s tiny baby program. She went home from the hospital in December 2023. These are the most humbling moments of Onyelobi’s career, seeing the smallest patients graduate from her specialized care.
“It’s a tearful, tearful, highly charged, emotional moment,” Onyelobi said. “It’s a good goodbye.”
Erin McGroarty is a health and policy reporter for the Cap Times in Madison. She can be reached at emcgroarty@captimes.com.
How a Madison doctor is saving the smallest lives is a post from Wisconsin Watch, a non-profit investigative news site covering Wisconsin since 2009. Please consider making a contribution to support our journalism.
