Parents of babies in NICU insist on long leave

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Hours after a new mom had an emergency C-section nine weeks before her due date, and her baby girl was taken to the neonatal intensive care unit (NICU) to be hooked up to a life-saving machine, she sent an email to her boss.

She was due to start a new job within five days. She had negotiated paid maternity leave in her contract and thought she would be able to keep working for at least a few months before needing to take it. But here she was, lying in a hospital bed with her abdomen cut open, her daughter fighting to survive.

She explained everything via email. How a doctor accidentally broke her water during a routine cervical exam, and the confusion that ensued when emergency surgery was needed to give birth. Her boss answered immediately. It was a short message that showed compassion and ended with the question, “Could you please confirm that you will be at work on Monday?”

Mother was panicking. She spoke to USA TODAY on condition of anonymity, citing a nondisclosure agreement in the lawsuit she settled with her former employer.

“Maybe she couldn’t hear me?” she said, recalling the email exchange. Human resources got involved, and the day after surgery, she had a Zoom call with her company from her hospital bed to plan. She said they suggested delaying her start date by two weeks so she could recover from the surgery. Then she has to start work in the morning. Her employer said she could visit her baby in the NICU in the afternoon and take maternity leave once her daughter was discharged from the hospital.

Her mother said at the time she thought the offer was generous. But like other parents who have to work while their newborn is in the hospital, especially mothers who often struggle with postpartum depression and anxiety while their bodies heal after surgery, she began to question the company’s policies and ethics. Her boss seemed sympathetic with some honest comments here and there, but there was no grace in his actions or duties. “I don’t think she cared,” her mother told USA TODAY. She said she had to answer work calls every day, in addition to having to take work calls from home and answer daily emails from the NICU.

“I remember being in bed and having the C-section band wrapped tightly around me. I still had some gauze left, so I turned on the Zoom camera,” she said. “I’m wearing makeup, but when I look down, it’s like everything is messed up. But I remember trying to keep my voice in a certain tone.”

Only one state in the United States offers paid NICU leave to parents. Colorado launched its first policy in January, giving NICU parents up to 12 weeks of paid leave, on top of the state’s 12 weeks of paid family leave. In the one month since the program went into effect, Jared Make, vice president of A Better Balance, the nonprofit that led Colorado’s paid NICU leave effort, told USA TODAY there have already been about 200 applicants. In Illinois, lawmakers recently approved 10 to 20 days of unpaid leave (depending on employer size) for NICU parents and provided job security to parents of infants in the NICU starting in June.

Dawn Huckelbridge, director of the national campaign Paid Leave For All, said other states with existing paid leave programs are also considering adding NICU leave. However, no other bills have been introduced at this time.

Most parents don’t plan for their baby to be born early, let alone for them to require intensive care in the first days, weeks, or months of life. Parents told USA TODAY that the weeks between being in the NICU and bringing their baby home for the first time can be so emotionally, mentally and financially taxing that the very idea of ​​working can feel impossible. But the reality of losing your job is often even scarier.

“If the private sector was going to solve these problems, it would already be there,” Hackelbridge said, noting that only one in four private sector workers takes family leave. “We’re at the mercy of our employers, and the vast majority of American workers don’t have that good track record.”

Even a strong parental leave policy is not enough for NICU parents. Here’s why:

Like other NICU parents, Sarah Brown was nearing the end of her paid maternity leave when her baby was brought home in 2017. Her baby was 40 days old, but was essentially a newborn.

Brown, who lives in Washington, D.C., said she was lucky that her company provided additional unpaid time off. That way, she was able to do things most parents do in the first 40 days, like getting the baby settled at home, working on a sleep schedule, introducing the newborn to other family members, and taking petting naps. “They took over my job,” she said. If her boss had followed company policy, she said, he would have placed her at work a few weeks after the baby came home.

Emily Weiss, a California mother, acknowledges that her state offers generous paid leave for parents. But the first three and a half months of her leave (which included pregnancy disability leave to recover from a C-section and severe postpartum depression) were spent in the NICU with her baby, praying and waiting for him to be strong enough to come home. When her son’s heart rate dropped and plateaued, she had to wake him up and pat him on the back. “It was an absolute nightmare,” Weiss said.

After 108 days, my son Miles came home. He had reflux disease, which is a common condition in babies in the NICU. Weiss said she cried 23 hours a day.

“By the time I started working, he had been in the NICU longer than he had been at home,” she said. “He probably knew the nurses better than I did, right?”

Two and a half months after Miles came home, Weiss went back to work. She said she could have taken an additional four weeks of unpaid leave, but her family could not afford it. She felt guilty asking her boss for more time off to attend her son’s multiple medical appointments.

“Fortunately, my manager was very understanding,” Weiss said. “But those first few months were exhausting, going in and out of the doctor’s office multiple times a week.”

Kathy Lawrence, also from California, said, “You don’t understand until you’re actually in that world.” She used a modified bed rest from 19 weeks into her pregnancy, and her son was born in February 2023, six weeks early. She received 10 weeks of unpaid leave in addition to her paid vacation.

“It turned out to be something that was very necessary,” Lawrence said. Even though her baby was only a month old when she came home, she was “starting from scratch” with everything she needed for a newborn. “I think a lot of people just don’t realize it,” she said.

Policy changes can take time. For now, NICU parents are dependent on each other.

Rep. Brittany Pettersen (D-Colo.) is working on a national bill that would provide additional time off for NICU parents. She’s currently advocating for unpaid leave, but eventually she wants everyone to be able to take paid parental leave, whether their child is in the NICU or not.

“It’s an unimaginable, unimaginable situation to have to worry about whether your baby is going to survive and have to make a choice between staying there and going to work,” Pettersen said. She said the unpaid leave is just a step, but an important one. “Can you imagine going through a situation like this and having bills pile up and worrying about whether you’ll have a job when you come back?”

Pennsylvania mother Jennifer Driscoll had a job when she returned to work after her daughter was admitted to the NICU in 2007. But that wasn’t the job she quit.

“When I came back, I was demoted,” she told USA TODAY. She was out for six months on a combination of FMLA, disability leave, sick leave, and vacation. During those months, she also went to WIC for additional support to buy special formula for her daughter. After that, her daughter’s medical expenses began to accrue.

“It was devastating for us,” Driscoll said of the demotion and pay cut. “I mean, what are you going to do? You’re in a very vulnerable position as a NICU parent.”

Driscoll now runs the Lily’s Hope Foundation, named after her daughter. The nonprofit organization provides special bottles, diapers, car seats, clothing and other resources for premature babies and helps other NICU families across the country.

“As a nonprofit, we want to make sure these families have what they need,” Driscoll said. “This is our passion.”

“It hurts to think about it.”

When a mother with a new job brought her 6-week-old, 5.5-pound daughter home from the hospital on oxygen and with a heart condition, she decided she had had enough of her uncooperative CEO. “It was clear that I couldn’t do this while taking care of her,” she said. She was required to give eight weeks’ notice and submitted her resignation. In the letter, the mother said she felt treated unfairly and asked the company to reconsider its parental leave practices.

Her boss told her to quit immediately without pay. “It was clear that I was being punished for writing what I wrote,” she said. Four years later, a judge sided with her in her discrimination lawsuit.

Since then, she has moved on with her life. But she can’t help but feel angry at the thousands of other women going through similar situations. She saw their anonymous posts in the Facebook group and was thrilled.

“It breaks my heart to think about how many women are just going through so much pain in silence, carrying it with them and passing it on to the next generation. All of this is unhealed trauma,” she said.

Her daughter is still small for her age, but she is doing well. Sometimes she wonders. Could her child have experienced that trauma as well?

“Did she feel me crying at night when I was holding her? For example, did she feel my nervousness?” she said. “Probably not. But you’re wondering about these things.”

Madeline Mitchell’s role covering women and the care economy for USA TODAY is supported by partnerships such as: extremely important and Journalism funding partners. Funders do not provide editorial input.

Contact Madeline at: memitchell@usatoday.com and @maddiemitch_ With X.

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