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In the hours after one new mom's emergency C-section − nine weeks before her due date − and as her baby girl was whisked away to the neonatal intensive care unit to be hooked up to life-saving machines, she emailed her boss.

She was supposed to start a new job in five days. She'd negotiated for paid maternity leave in her contract, thinking she'd at least have a couple of months of work under her belt before she'd need to use it. But here she was, lying in a hospital bed with her abdomen cut open and her daughter fighting to stay alive.

She explained everything in the email: How her doctor accidentally broke her water during a routine cervical exam, and the chaos that ensued as she was rushed into an emergency surgery to delivery her baby. Her boss replied quickly. It was a brief message, offering some compassion and ending with the question: "Can you please confirm that you'll be at work on Monday?" 

The mother was flustered. She requested anonymity due to legal constraints.

"I'm like, did she not hear me?" she said, reflecting on the email exchange. Human resources got involved, and the day after her surgery, from her hospital bed, she hopped on a Zoom call with her company to come up with a plan. She said they offered to push her start date back two weeks so she could recover from the surgery. After that, she'd need to start working in the mornings. Her employer said she could visit her baby in the NICU in the afternoons, and take maternity leave once her daughter was discharged from the hospital.

At the time, the mother said, she thought that offer was generous. But like other parents who need to work while their newborns are in the hospital − especially mothers who are simultaneously healing their own bodies post surgery and often battling postpartum depression and anxiety − she started to question her company's policy and ethics. Her boss seemed to empathize in offhanded comments here and there, but in action and assignments showed no grace. "I don't think that she cared," the mother told USA TODAY. She said she had to take work calls and answer emails from the NICU every day, on top of leading work calls from home.

"I remember being in bed and having this C-section band just, like, tightly wrapped around me, I still have gauze, and I turn on my Zoom camera," she said. "I have makeup on. But then when you look completely below, it's like, everything is like a complete mess. But I remember trying to hold my voice to such a steady tone."

Only one state in the United States offers paid NICU leave for parents. Colorado began its first-of-its-kind policy in January, providing up to 12 weeks of paid leave for NICU parents in addition to the state's 12 weeks of paid family leave. In the month since the program took effect, Jared Make, vice president of A Better Balance nonprofit that helped lead the paid NICU leave effort in Colorado, told USA TODAY there have already been about 200 applicants. In Illinois, lawmakers recently approved 10-20 days of unpaid leave (depending on employer size) for NICU parents, providing job security for parents of NICU babies starting in June. 

Other states with existing paid leave programs are exploring additional NICU leave, said Dawn Huckelbridge, director of the national campaign Paid Leave For All. But no other bills have been introduced at this time.

Most parents don't plan for their baby to come early, let alone need intensive care in their first days, weeks or months of life. Parents told USA TODAY that NICU stays, and the weeks that follow when their babies come home for the first time, are often emotionally, mentally and financially taxing, so much so that the idea of working feels impossible. But the reality of losing their jobs is often more frightening.

"If the private sector was going to solve these problems, it would have happened already," Huckelbridge said, noting that only 1 in 4 civilian workers have paid family leave. "We're at the mercy of employers, and there's not a good track record of that for the majority of workers in the United States." 

Even robust parental leave policies aren't enough for NICU parents. Here's why.

Like other NICU parents, by the time Sarah Brown's baby was able to come home in 2017, her paid maternity leave was almost up. Her baby was 40 days old, but essentially a newborn. 

Brown, who lives in Washington, DC, said she was lucky that her company provided extra unpaid leave so she could do the things most parents tackle in those first 40 days: settling their baby into their home, working on a sleep schedule, introducing their newborn to other family members and taking contact naps. "They held my job for me," she said. If her boss had kept to the company's policy, she said, they'd have posted her job a few weeks after her baby came home.

Emily Weiss, a mother in California, recognizes her state has robust paid leave for parents, too. But the first three-and-a-half months of her leave − which included pregnancy disability leave for her C-section recovery and severe postpartum depression − were spent by her baby's side in the NICU, waiting and praying he'd get strong enough to come home. When her son's heart rate would dip and flatline, she'd have to wake him up and pat his back. "It was just a nightmare," Weiss said. 

After 108 days, her son Miles came home. He had reflux, which is common for NICU babies. Weiss said he was crying 23 hours a day.

"He was in the NICU longer than he was at our house, by the time I started work," she said. "He probably knew the nurses better than he knew me, you know?" 

Two-and-a-half months after Miles came home, Weiss was back to work. She said she could have taken an additional four weeks off unpaid, but her family couldn't afford it. She felt guilty asking her boss for more time off for her son's many doctor's appointments.

"Luckily my manager was very understanding," Weiss said. "But I was just like, you know, I'm in and out of doctor's offices these first couple months, multiple times a week, which was rough."

"People don't understand it until they're in it," said Cassie Lawrence, who also lives in California. She was on modified bedrest starting 19 weeks into her pregnancy, and her son was born six weeks early, in February of 2023. She took 10 weeks of unpaid leave in addition to her paid leave. 

"It just ended up being very necessary," Lawrence said. Even though her baby was a month old when he came home, she was "starting from square one" with all the things a newborn needs. "I think a lot of people just don't realize that," she said.

Policy changes could take time. For now, NICU parents rely on each other

U.S. Rep. Brittany Pettersen, D-Colorado, is working to introduce a national bill that would provide additional leave for NICU parents. She's advocating for unpaid leave now, though eventually she hopes everyone is entitled to paid parental leave, whether their child is in the NICU or not.

"It is unimaginable, an unimaginable situation, when you're worried about whether or not your baby is going to survive, and then having to pick between being there or choosing ... your job," Pettersen said. Unpaid leave, while a baby step, is an important one, she said. "Can you imagine going through this situation, the bills that pile up in these circumstances, and then worrying about whether or not you're going to have your job when you return?"

Jennifer Driscoll, a mother in Pennsylvania, had a job when she returned to work following her daughter's NICU stay in 2007. But it wasn't the job she'd left with.

"I got demoted when I went back," she told USA TODAY. She'd been gone for six months, cobbling together time off through the federal family‑ and medical‑leave program, disability leave, sick leave and vacation time. In those months, she'd also enrolled in the government’s nutrition‑assistance program for women, infants and children, or WIC, for extra support to afford her daughter's special formula. Then, her daughter's medical bills started rolling in. 

"That was devastating to us," Driscoll said about her demotion and pay cut. "I mean, what are you going to do? You're in a very vulnerable position as a NICU parent."

Now, Driscoll runs Lily's Hope Foundation, named for her daughter. The nonprofit helps other NICU families across the country, providing special bottles, diapers, car seats, clothing and other resources for premature babies.

"We, as a nonprofit, want to make sure these families have what they need," Driscoll said. "This is our passion."

'It is painful to think about'

Once the mother with a new job brought her daughter home from the hospital at about six weeks old and 5.5 pounds, with an oxygen tank and a heart condition, she decided she'd had enough of her unsupportive CEO. "It was just very clear that I could not do this while caring for her, too," she said. She submitted her resignation, with the required eight-weeks notice. In her letter, the mother said she explained that she felt she was treated unfairly and urged the company to reconsider its parental leave practices.

Her boss told her to leave immediately, without pay. "It was very clear that I was being punished for writing what I wrote," she said.

She's since moved forward with her life. But she can't help feeling angry for the thousands of other women going through similar situations. She sees their anonymous posts in Facebook groups, and her chest swells.

"It is painful to think about how many women are out there who are just silently experiencing so much of this pain and carrying it and passing it on to the next generation," she said. "All this unhealed trauma."

Her daughter is doing well, although she's still small for her age. Sometimes she wonders: Did her child experience that trauma, too?

"Did she feel me crying at night when I was holding her? Like, did she feel my strain?" she said. "Probably not. But you wonder about these things."