Her son spent 87 days in the NICU. Now she’s fighting for moms and babies to get the support they’re missing
Stephanie Roberson wants NICU moms to get the health care, paid leave and therapy they need. Here's how she's making it happen.
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Mothering America is a regular column from Motherly and Chamber of Mothers sharing moms’ stories from across the country, showing the power of coming together to make change. Each piece is part of a larger effort to ensure every mother and family in the U.S. has the support and care to be well.
Stephanie Roberson’s second pregnancy was completely normal: Every ultrasound was fine, and all of her test results were good. Then, as she lay down next to her 2-year-old to put him to bed one night, her water broke. She was 24 weeks pregnant.
She walked into the bathroom, put a towel under her legs, and called her doctor, who told her she needed to get to a hospital with a higher level of NICU care. “I have this core memory of stepping off the towel, and it was completely soaked except for two dry footprints where I was standing,” she says.
Roberson’s husband was traveling for work, so she called her neighbor to stay with her son while her mother—who happened to be visiting—drove her to the hospital. She tried not to scare her son while packing up, but she was panicked: How would a baby survive being born right now?
At the hospital, staff told her she’d need to stay until the baby was born. She was put on bed rest, and a neonatologist came to talk through survival statistics. “They try to present the information in a positive way, but it’s still very scary.” Survival rates for an infant born around 25 weeks are about 80 percent.
Roberson wrapped her head around the possibilities: a baby who didn’t live, a medically fragile child, a high likelihood of vision, hearing, and lung issues, suppressed immunity. “Your mind is focused on survival,” she says, “but also how will your life change if you have a child who is going to have all of these additional needs?”
As someone who likes to plan, Roberson immediately ordered books on prematurity and immersed herself in medical terminology, potential challenges, and long-term outcomes. “I was just trying to learn as much as I possibly could, to be the best advocate that I could for him.” She also struggled with shame, wondering if she had caused this, and that her body had failed her son.
After 13 days on bed rest at the hospital, Roberson went into labor at 25 weeks and 6 days. Her husband was home with their 2-year-old, and the baby came quickly. “We exited the room at 11:22, and he was born at 11:36.”
What 87 days in the NICU looks like
The entire NICU team was there for Roberson’s delivery, and as they started to assess her son Myles, she heard him cry—a good sign. “The cry was so tiny that it sounded like a baby a couple of rooms away,” she remembers. Myles had strong Apgar scores, too. “They smooshed him against my cheek, and then off he went.”
Myles stopped breathing multiple times a day for 77 days, a common complication of prematurity treated with caffeine to stimulate an underdeveloped brain. Sometimes he required physical stimulation to start breathing again. The unknown was the hardest part. “You don’t know what the outcome is going to be for your child.”
The NICU had its own stresses, with monitors constantly going off and bearing witness to other families’ fear. “You’re hearing everything that’s going on, and you wind up sitting in a whole lot of grief,” Roberson says. She watched one family bring in extended relatives to say goodbye to a baby who wasn’t going to make it.
During his time in the NICU, Myles didn’t need any surgeries, and he never needed to be intubated. “On his discharge, the chief of neonatology said, ‘I hope you know that he’s a one-in-a-million miracle baby,” Roberson remembers. By 12 months, he was caught up on all milestones and ahead on some. Today, Myles is a thriving four-year-old.
Yet Roberson quickly realized she had privileges others in her situation didn’t: a supportive partner, a job, and paid family and medical leave. Without these supports, her story likely would have looked very different.
How we’re failing NICU families
During her time in the NICU, she watched mothers cry on the phone with insurance companies as they were denied coverage. One mother, admitted the same day, had only been in town for Thanksgiving when she went into labor—and now needed to get home, four hours away, and back to a job and an older child who needed to return to school. “How do I do this?” Roberson remembers her asking. “It sort of hits you from everywhere.”
Roberson took nine and a half months of combined medical, maternity, and state-funded family leave to heal. Most parents can’t do that. Only 14 states and Washington, D.C. have state-enacted paid family and medical leave policies; about 27% of workers have access to paid family leave. While the federal Family and Medical Leave Act (FMLA) offers eligible workers 12 weeks of unpaid leave, NICU parents can use most or all of it while their baby is still in the hospital. The U.S. is still without a federal paid family and medical leave policy.
The costs piled up, too. The bill for Myles’ care came to nearly $1.5 million. Roberson had insurance that covered all but $1,300 of her deductible. Infants admitted to the highest-level NICU average over $3,000 in out-of-pocket spending in their first two years with private insurance—and that’s before parking, childcare, hotel stays, and meals, which can tally to hundreds per day.
NICU parents are also at increased risk for a perinatal mental health condition like postpartum depression or anxiety—or, in Roberson’s case, post-traumatic stress disorder (PTSD). Roberson processed her experience through months of therapy. Yet, with too few trained providers and insurance barriers, some 75% of mothers with perinatal mental health conditions go untreated, leaving families, workplaces, and the economy to pay the price.
“I could recognize the privilege that I had in the situation,” she says. “It really sort of tore something open, seeing how that didn’t apply to everyone.”
Getting NICU families the support they need
Then, she found out that mothers were organizing to make change. In 2024, she joined Chamber of Mothers, a national nonpartisan nonprofit dedicated to winning paid leave, affordable, accessible childcare, and improved maternal outcomes for all Americans.
“I just knew that I wanted to be doing something that would change things for moms and babies.” In July, Roberson became chair of the board, leading the group’s efforts to ensure all mothers in this country have access to the care and support they need. Chamber of Mothers has 52 chapters around the country where moms gather to turn their lived experiences into cultural and policy changes that positively impact moms.
Some states, including Colorado and Illinois, have added NICU leave to their state’s paid leave policies. This past winter, Roberson joined Chamber of Mothers in Washington, D.C. to support drafted federal legislation that would provide NICU leave to parents.
Says Roberson: “There are basic things that we all deserve to have. Once my eyes were open to it, I couldn’t unsee it, and it pushed me hard to say: Everybody deserves better.”
Chamber of Mothers is the largest nonpartisan nonprofit dedicated to winning paid leave, affordable, accessible childcare, and historic investments in maternal health. Chamber of Mothers works at the local, state, and federal levels to change laws and culture so mothers can be well. Join 100,000 other members and a local chapter near you.
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