the coronavirus hit, however, she and other parents of St. Mary’s patients were faced with a difficult decision. The hospital, which cares for about 130 of New York’s sickest children, wanted to limit possible contamination and suspended all visitation, following an order from the state. But in shutting its doors, it also made an unusual offer to some of its families: One parent per child could move in.
There was a wrinkle, however: If a parent later changed her mind and decided to leave, she could not return until the ban on visitors was lifted.
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Ultimately, 20 mothers and two fathers moved into St. Mary’s, in the Bayside neighborhood, bringing pajamas, sweatpants, toiletries, vitamins and laptops. Most now have been there for nearly three months, sleeping on recliners in their children’s rooms and becoming immersed in their care — and sharing just one shower.
“We just thought it was going to be a two-week thing,” said Lucy Ramirez, whose 6-year-old son, Anthony, is on round-the-clock oxygen for lung issues. “But then they kept extending and extending.”
One father has even been keeping a journal for his infant daughter, who is being treated for feeding issues.
“The most important thing is I am here,” he wrote. “I feel that it is my duty as your father to be your advocate and bedside playmate.”
Patty Agurto, who moved in with her 18-year-old daughter, Taylor, said, “The hard thing here is obviously just being away — not having the amenities you have at home, not sleeping in your own bed.”
Taylor wears diapers and requires a feeding tube and ventilator support.
Ms. Agurto said she can only wave to her two older children through the large lobby windows. “I see my kids,” she said, “through the glass.”
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The parents say they communicate with their families over FaceTime, eat donated meals and fill their evenings with reading, a virtual painting class and watching “Veep,” “Game of Thrones” and “The Last Dance.”
It was in March that New York State issued the ban on visitors to nursing homes and other adult care facilities, which also applied to St. Mary’s because so many of its patients receive long-term care there, a hospital spokesman said.
The hospital’s strict visitation policy has so far paid off: Not one of its medically fragile patients has tested positive for the coronavirus, said Dr. Edwin Simpser, its chief executive and a practicing pediatrician.
The facility treats roughly 250 patients a year, Dr. Simpser said. They range in age from newborn to 21; some are there for rehabilitation with the goal of leaving the hospital, and others remain in long-term care.
Some of the children have complications from extreme prematurity. Many require the support of ventilators and feeding tubes. Some have severe neurological, cognitive or genetic disorders. There are accident and burn victims, and children on palliative care for cancer and AIDS.
For these young patients, Covid-19, the disease caused by the coronavirus, could be devastating, Dr. Simpser said. “We’re desperate to keep this bug out of our building.”
Dr. Simpser added that St. Mary’s long had practiced state-of-the-art infection control techniques — special filtration in air handlers and the use of ultraviolet light in cleaning rooms — and employees and parents received masks and gloves early on.
As for parents moving in? “We decided that the way we’re handling it is safe in that the parents are not coming and going,” Dr. Simpser said.
As a further precaution, St. Mary’s restricted parents to their child’s unit (the floors are divided among newborns, toddlers and older children). Many who stayed have since bonded with each other.
Ms. Johnson likened the experience to “a little voyage that we were taking together, because we were embarking on the unknown.”
Choosing which parent would remain with a child was not easy. The father who has been keeping a journal for his daughter, who asked to be identified only by his first name, Chris, said he and his wife decided he should stay because he could work remotely. His wife had to return to her job in health care.
Each evening after her workday ends, he said, his wife makes a 30-to-45 minute drive to St. Mary’s to drop off breast milk for their infant daughter, who receives it through a feeding tube.
She also brings him snacks and an occasional dinner or sandwich from a deli near her job.
He fills a bag with dirty laundry and another with empty milk bottles. They leave the items for each other on a table in the vestibule. Then, they stand at the window, blowing kisses and giving air hugs to each other, he said.
“Your transfer to St. Mary’s has not been easy on your mother and I,” Chris wrote in his journal on April 29.
Sheronda Patton, another parent, also began taking notes after her daughter, Noa, arrived at St. Mary’s from a neonatal intensive care unit at NewYork-Presbyterian/Weill Cornell Medical Center in April.
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Noa, born in October three months early, was a micropreemie — weighing just 1 pound, 4 ounces.
“It’s been a loop of emotions — learning trach cares, vent settings, plus learning Noa’s patterns,” Ms. Patton wrote on April 15. “I’m beyond exhausted.”
The parents uniformly praise St. Mary’s for its care of their children and its willingness to make their own stays as comfortable as possible. But the hospital was not built as a hotel: There is that one shower, on the ground floor, which has meant waiting times of up to 40 minutes.
Not every room is private, either: Ms. Agurto, for example, shares a room with Taylor and three other girls. All four girls are on ventilators at least part of the day.
Some parents said that as hard as it has been to be separated from other family members, they are spending more time than ever with their children.
Poonam Pathak said she used to wake up in the morning, yearning to see her hospitalized daughter, Christine, who is now 2 and needs ventilator support for several hours each day.
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“Here, every day I see Christine,” Ms. Pathak said, describing walking with her and holding her as “the best moments of my life.”
In the hospital’s fenced-in backyard overlooking Little Neck Bay, the only place the parents can go outdoors, small groups meet for exercise (with social distancing); they also sit in swings in the playground area, play cards and dance to TikTok videos. Several parents have eaten lunch together and had a “group talk about our situations, our kids and how we felt,” said Renée Barrett, whose 14-year-old son, Jayson, is undergoing rehabilitation after complex leg surgery.
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Jochana Chakma, another parent, said they focus on the positive: “We try to discuss the happy things.”
Over time, five of the parents had to leave St. Mary’s.
Ms. Johnson, who was there almost two months, said she had to return to work and attend to her mother’s health.
She gently raised her pending departure with her daughter, Ariana, who, she said, after multiple surgeries, was again learning to walk, read and process thoughts.
“I said, ‘Ariana, Mommy’s going to have to go home,’” Ms. Johnson recalled. “And she said, ‘OK. And you’re going to come back?’
“And I said, ‘I will come back. I’m not going to be able to come back right away.’
“And she asked me, what was ‘right away?’”
Ms. Johnson said she began to cry.
A sixth parent, Ms. Patton, left on May 29 when Noa, her micropreemie who then was 7 months old and weighed 11 pounds, 2 ounces, was discharged.
“I did say goodbye to the other moms with hugs and smiles,” Ms. Patton recalled in an email.
In her own notes, she wrote, “We are heading home with much joy.”
Other parents continue with their unusual quarantine. Chris, who has been keeping the journal for his infant daughter, wrote on May 10 that after dressing her in a “My First Mother’s Day” onesie, he held up his phone so her family members could see her and speak to her.
“It really hurts to see your mother tear up because she can’t physically be with you on this special day,” Chris wrote. “I know that if she could have traded places with me and stayed in the hospital with you, she would have done so in a flash.”
