For greater than a yr, Onyx Johnson spent lots of her days visiting her 17-year-old daughter, Ariana, a former honor-roll scholar and athlete, at St. Mary’s Hospital for Kids in Queens, the place she was recovering from traumatic mind damage she suffered when hit by a motorist in 2018.
“I couldn’t think about being with out her, or her not seeing my face, for a protracted, prolonged time frame,” Ms. Johnson mentioned.
When the coronavirus hit, nonetheless, she and different dad and mom of St. Mary’s sufferers had been confronted with a troublesome resolution. The hospital, which cares for about 130 of New York’s sickest youngsters, needed to restrict potential contamination and suspended all visitation, following an order from the state. However in shutting its doorways, it additionally made an uncommon supply to a few of its households: One father or mother per youngster may transfer in.
There was a wrinkle, nonetheless: If a father or mother later modified her thoughts and determined to go away, she couldn’t return till the ban on guests was lifted.
In the end, 20 moms and two fathers moved into St. Mary’s, within the Bayside neighborhood, bringing pajamas, sweatpants, toiletries, nutritional vitamins and laptops. Most now have been there for almost three months, sleeping on recliners of their youngsters’s rooms and turning into immersed of their care — and sharing only one bathe.
“We simply thought it was going to be a two-week factor,” mentioned Lucy Ramirez, whose 6-year-old son, Anthony, is on round the clock oxygen for lung points. “However then they saved extending and lengthening.”
One father has even been preserving a journal for his toddler daughter, who’s being handled for feeding points.
“A very powerful factor is I’m right here,” he wrote. “I really feel that it’s my responsibility as your father to be your advocate and bedside playmate.”
Patty Agurto, who moved in along with her 18-year-old daughter, Taylor, mentioned, “The exhausting factor right here is clearly simply being away — not having the facilities you have got at house, not sleeping in your individual mattress.”
Taylor wears diapers and requires a feeding tube and ventilator help.
Ms. Agurto mentioned she will solely wave to her two older youngsters by means of the big foyer home windows. “I see my youngsters,” she mentioned, “by means of the glass.”
The dad and mom say they impart with their households over FaceTime, eat donated meals and fill their evenings with studying, a digital portray class and watching “Veep,” “Sport of Thrones” and “The Final Dance.”
It was in March that New York State issued the ban on guests to nursing houses and different grownup care amenities, which additionally utilized to St. Mary’s as a result of so lots of its sufferers obtain long-term care there, a hospital spokesman mentioned.
The hospital’s strict visitation coverage has thus far paid off: Not one in every of its medically fragile sufferers has examined constructive for the coronavirus, mentioned Dr. Edwin Simpser, its chief government and a practising pediatrician.
The power treats roughly 250 sufferers a yr, Dr. Simpser mentioned. They vary in age from new child to 21; some are there for rehabilitation with the objective of leaving the hospital, and others stay in long-term care.
Among the youngsters have issues from excessive prematurity. Many require the help of ventilators and feeding tubes. Some have extreme neurological, cognitive or genetic problems. There are accident and burn victims, and kids on palliative take care of most cancers and AIDS.
For these younger sufferers, Covid-19, the illness attributable to the coronavirus, might be devastating, Dr. Simpser mentioned. “We’re determined to maintain this bug out of our constructing.”
Dr. Simpser added that St. Mary’s lengthy had practiced state-of-the-art an infection management methods — particular filtration in air handlers and using ultraviolet mild in cleansing rooms — and workers and fogeys acquired masks and gloves early on.
As for folks shifting in? “We determined that the way in which we’re dealing with it’s protected in that the dad and mom usually are not coming and going,” Dr. Simpser mentioned.
As an additional precaution, St. Mary’s restricted dad and mom to their youngster’s unit (the flooring are divided amongst newborns, toddlers and older youngsters). Many who stayed have since bonded with one another.
Ms. Johnson likened the expertise to “a bit voyage that we had been taking collectively, as a result of we had been embarking on the unknown.”
Selecting which father or mother would stay with a toddler was not simple. The daddy who has been preserving a journal for his daughter, who requested to be recognized solely by his first identify, Chris, mentioned he and his spouse determined he ought to keep as a result of he may work remotely. His spouse needed to return to her job in well being care.
Every night after her workday ends, he mentioned, his spouse makes a 30-to-45 minute drive to St. Mary’s to drop off breast milk for his or her toddler daughter, who receives it by means of a feeding tube.
She additionally brings him snacks and an occasional dinner or sandwich from a deli close to her job.
He fills a bag with soiled laundry and one other with empty milk bottles. They go away the objects for one another on a desk within the vestibule. Then, they stand on the window, blowing kisses and giving air hugs to one another, he mentioned.
“Your switch to St. Mary’s has not been simple in your mom and I,” Chris wrote in his journal on April 29.
Sheronda Patton, one other father or mother, additionally started taking notes after her daughter, Noa, arrived at St. Mary’s from a neonatal intensive care unit at NewYork-Presbyterian/Weill Cornell Medical Middle in April.
Noa, born in October three months early, was a micropreemie — weighing simply 1 pound, four ounces.
“It’s been a loop of feelings — studying trach cares, vent settings, plus studying Noa’s patterns,” Ms. Patton wrote on April 15. “I’m past exhausted.”
The dad and mom uniformly reward St. Mary’s for its care of their youngsters and its willingness to make their very own stays as comfy as potential. However the hospital was not constructed as a resort: There’s that one bathe, on the bottom flooring, which has meant ready instances of as much as 40 minutes.
Not each room is personal, both: Ms. Agurto, for instance, shares a room with Taylor and three different women. All 4 women are on ventilators no less than a part of the day.
Some dad and mom mentioned that as exhausting because it has been to be separated from different relations, they’re spending extra time than ever with their youngsters.
Poonam Pathak mentioned she used to get up within the morning, craving to see her hospitalized daughter, Christine, who’s now 2 and desires ventilator help for a number of hours every day.
“Right here, day-after-day I see Christine,” Ms. Pathak mentioned, describing strolling along with her and holding her as “the perfect moments of my life.”
Within the hospital’s fenced-in yard overlooking Little Neck Bay, the one place the dad and mom can go outside, small teams meet for train (with social distancing); in addition they sit in swings within the playground space, play playing cards and dance to TikTok movies. A number of dad and mom have eaten lunch collectively and had a “group discuss our conditions, our children and the way we felt,” mentioned Renée Barrett, whose 14-year-old son, Jayson, is present process rehabilitation after complicated leg surgical procedure.
Jochana Chakma, one other father or mother, mentioned they deal with the constructive: “We attempt to focus on the comfortable issues.”
Over time, 5 of the dad and mom needed to go away St. Mary’s.
Ms. Johnson, who was there nearly two months, mentioned she needed to return to work and attend to her mom’s well being.
She gently raised her pending departure along with her daughter, Ariana, who, she mentioned, after a number of surgical procedures, was once more studying to stroll, learn and course of ideas.
“I mentioned, ‘Ariana, Mommy’s going to must go house,’” Ms. Johnson recalled. “And he or she mentioned, ‘OK. And also you’re going to return again?’
“And I mentioned, ‘I’ll come again. I’m not going to have the ability to come again straight away.’
“And he or she requested me, what was ‘straight away?’”
Ms. Johnson mentioned she started to cry.
A sixth father or mother, Ms. Patton, left on Might 29 when Noa, her micropreemie who then was 7 months outdated and weighed 11 kilos, 2 ounces, was discharged.
“I did say goodbye to the opposite mothers with hugs and smiles,” Ms. Patton recalled in an electronic mail.
In her personal notes, she wrote, “We’re heading house with a lot pleasure.”
Different dad and mom proceed with their uncommon quarantine. Chris, who has been preserving the journal for his toddler daughter, wrote on Might 10 that after dressing her in a “My First Mom’s Day” onesie, he held up his cellphone so her relations may see her and converse to her.
“It actually hurts to see your mom tear up as a result of she will’t bodily be with you on this big day,” Chris wrote. “I do know that if she may have traded locations with me and stayed within the hospital with you, she would have performed so in a flash.”