Tiny patients, big fight: NICU parents win leave in 2 states and push for more

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NEW YORK (AP) — Moments after his daughter Olivia was born, Marlon White felt his wife's hand slacken as she fainted. The baby, born at 29 weeks weighing about 2 pounds, wasn't making a sound as she was rushed to the neonatal intensive care unit. Terrified, he waited in the hall while the doctors stabilized his newborn and wife.

The next day, White, a welder, was back at work. Two days later, his wife, Farra Lanzer-White, was also back on the job, setting up a work station at the Denver hospital. For two months, first at one hospital then another, she kept up with emails and meetings as alarm bells went off each time Olivia stopped breathing, as she herself prepared for open-heart surgery for a condition discovered during her difficult pregnancy.

The Fort Collins, Colorado couple made a choice familiar to many parents with newborns in intensive care: Keep working while the baby is in the NICU to save any parental leave they might have for when the baby comes home. They are now part of a growing movement advocating for the adoption of NICU leave in the country's patchwork of family leave policies, which differ between states, cities and companies.

In January, seven months after Olivia was born, Colorado became the first U.S. state to adopt paid NICU leave, offering up to 12 weeks for parents with newborns in intensive care on top of the 12 weeks of parental leave under the state's family and medical leave program. A more modest policy will take effect next month in Illinois, guaranteeing between 10 and 20 days of unpaid leave to NICU parents.

While advocates want more states to adopt NICU leave, a major focus now is galvanizing support for a federal bill to add NICU leave to the Family and Medical Leave Act, the 1993 law that entitles eligible workers nationwide to take unpaid leave for family and medical reasons, said Inimai Chettiar, president of A Better Balance, a nonprofit that advocates for paid leave and other workplace policies in support of families.

“We think it’s promising in terms of bipartisan support, because as we’ve approached people, it seems that they intuitively understand it," said Chettiar.

U.S. Rep. Brittany Pettersen, a Colorado Democrat who is drafting the federal bill said it would offer up to 12 weeks of NICU leave on top of the 12 weeks of parental leave available under the FMLA.

The U.S. has no federal law mandating paid family or parental leave, an issue that has long divided Democrats and Republicans. While FMLA leaves out many workers who can't afford to take unpaid leave, Pettersen said the goal is to win bipartisan support for the idea of NICU leave and bring it to the forefront of discussions surrounding parental leave.

The NICU leave bills passed in Colorado and Illinois offer mixed signals about the potential for bipartisanship. Colorado's paid leave passed mostly along party lines, while the shorter, unpaid leave adopted in Illinois had overwhelming bipartisan support.

Unlike Colorado, Illinois does not already have a paid family leave program in which it could incorporate NICU leave, said Illinois state Rep. Laura Faver Dias, a Democrat who introduced the bill and whose twin boys were born at 27 weeks in 2014 and stayed intensive care for three months.

Several Republican lawmakers became co-sponsors, including state Rep. Nicole La Ha, whose daughter spent 45 days in the NICU in 2017 after her water broke at almost 30 weeks.

“Unless you have had this experience, you can’t fully understand why something like this is so meaningful,” said La Ha. “You have an infant who is struggling to eat and breathe. The last thing you want to think about is work but unfortunately you have bills to pay.”

While Colorado's bill lacked bipartisan support, Colorado State Sen. Jeff Bridges said “it was the quietest opposition you could hear,” with few Republicans or business groups publicly speaking against it. Bridges introduced the bill a year after his son Kit was born two months early and weighing just 2 pounds.

“I wanted to share stories that were so moving that the lobbyists would look like monsters if they opposed it,” Bridges said.

Nearly one out of 10 babies born in the U.S. are admitted to a NICU, according to the most recent figures from the Centers for Disease Control and Prevention.

While in the NICU, newborns are still learning to swallow, breath on their own and regulate their body temperature, said Dr. Karen Puopolo, section chief for Newborn Medicine at Pennsylvania Hospital and chair of the Committee on Fetus and Newborns of the American Academy of Pediatrics. Parental presence has a “multitude of advantages both ways," Puopolo said. Skin-to-skin contact slows down the baby's heart beat, improves their breathing and helps the mother with milk production.

In recent years, a smattering of companies have adopted dedicated paid NICU leave, including Morgan Stanley, Pinterest and the organic baby formula company Bobbie, while others have extended the length of parental leave or added policies like caregiving leave, which could also help NICU parents.

But mostly, the plight of NICU parents has been a blind spot, said Sahra Cahoon, executive director Love for Lily, a Colorado-based organization that supports NICU families and advocated for Colorado's new law.

Cahoon launched the organization after her daughter Lily, born at 24 weeks and five days, died after three-and-a-half months in the NICU. Cahoon, who owned a jewelry-making business at the time, said she worked, believing her daughter would survive.

“It's probably one of my biggest regrets,” Cahoon said, though at the time she felt lucky to be able to work remotely from the hospital and didn't feel she could afford to give up her income. “We did not know that our story was going to end that way.”

Nearly 800 people have applied for neonatal care leave since Colorado’s policy took effect in January, according to Tracy Marshall, director of Colorado’s Family and Medical Leave Insurance Division.

Among the first were Chris and Stevie Madden, whose son was born almost eight weeks early on Jan. 11.

Stevie Madden, a mental health professional who had been rushed to the hospital after her blood pressure spiked and she began bleeding, said she panicked about how to handle the crisis and work when she realized she had planned to start her maternity leave much later.

A nurse at the hospital, however, told Chris Madden about the new NICU leave, which they both applied for.

Madden, an oil field mechanic, said he wouldn’t have been able to keep him mind on his risky job while his son was fighting for his life. He said he learned how to handle his baby’s delicate skin — press gently, don’t rub — and gained the confidence he needed when Roczen stopped breathing once after returning home and had to be rushed the hospital.

He told every parent he met at hospital about NICU leave.

“It was life changing not to have to think about money and stress and just be present with your baby,” Madden said.

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