• LeadingAge New York

Children’s care home keeps kids virus-free through diligence, self-sacrifice

A typical day for nurse Jillian Coar at the Elizabeth Seton Children’s Center, a facility in Yonkers that offers long-term care to medically complex youth, involves administering medications, monitoring feeding tubes, suctioning tracheostomies and dressing wounds.

But since the facility had to stop allowing visitors — even family — in March, Coar’s work now also includes hosting tea parties and sing-alongs, giving hugs and cuddles to her young charges, and arranging FaceTime sessions for friends and family.

“We’re not just nurses now,” says Coar. “We’re standing [in] for the parents also.”

“We have to protect their emotional well-being as well as their health,” adds her colleague Vanessa Andrews, director of child life, therapeutic recreation and volunteers. “It’s both hard and heartbreaking, but it also drives us to keep going because it’s what these kids have.”

The center took early drastic steps to keep its children safe during the COVID-19 crisis, not allowing visitors, requiring all staff to change into their scrubs on the premises and wear masks, upping their already intensive cleaning and sanitation procedures. They also closed its school and implemented social distancing between both staffers and patients. It’s been a great challenge, but it’s paid off. To date, not one patient has contracted the virus — a stark anomaly among residential-care facilities.

“Our kids have never been so healthy,” says CEO Pat Tursi. She credits their success at keeping the virus out of the center, in part, with their day-to-day vigilance in non-pandemic times.

“We have a wonderful infection prevention program year-round,” she says, noting that they have a full-time nurse dedicated to infection prevention and regularly consult with an infectious disease doctor, Dr Natalie Neu at Columbia University Medical Center.

An outbreak at the center, which is the largest pediatric nursing facility in the country, would prove particularly devastating. The 169 children who live there have a host of serious conditions, from rare genetic diseases to seizure disorders, neurological issues and cerebral palsy. The majority of them don’t communicate verbally. Many have chronic lung disease — 65 are on ventilators full-time, and another 25 or so require partial ventilation.

In February, Tursi assembled the leaders from all of the various departments of the center — school, dining, nursing, medical, rehab, child life, human resources, purchasing and finance — to come up with a coronavirus plan.

“We wanted to make sure we did everything we could to protect the children,” she says. “We got ahead of the curve. We started implementing things two to three weeks ahead of executive orders.”

There were a number of considerations. Residents typically see several specialists, but outside medical care now has to be limited to emergencies only, since going out to a doctor’s office or hospital is just too dangerous. Transporting a patient from Elizabeth Seton Children’s often requires an ambulance and both a registered nurse and respiratory therapist.

“You’re taking two [staff] members and a child and going into an unclean environment, and then bringing them back here,” says Tursi, noting that the kids now see specialists online.

“[Not doing] that has made a big difference.”

As is typical, a few kids from the center have required hospitalization (for reasons unrelated to COVID-19) since this all began. When they were readmitted to Elizabeth Seton Children’s, they were sequestered for 14 days. The center’s school, which was shut down in March, now functions as an isolation ward for such purposes.

The facility’s already vigilant cleaning procedures, which include the use of an electrostatic sprayer, have also been stepped up, and the staff limit their contact with each other while working and during lunch breaks, restricting their activity to certain units each day. And, not only are the children not allowed visitors, they also have limited contact with each other, which means they are no longer able to see their friends in other units.

“That was hard to get used to, because with kids, you know, you’re always all gathered together,” Tursi says. “It felt against all of our core values.”

But the staff have come up with creative workarounds to keep their patients happy and entertained.

“Like a lot of the parents are doing at home now, we’ve tried to get on board with all of the virtual activities that are possible — visiting the aquarium, going to the museums and really trying to create a day that’s as exciting and interesting as it was before this happened,” says Andrews. “We even organized a virtual game time so that the kids could see each other.”

The no-visitation policy has been especially hard on parents. One opted to care for her child at home instead; another moved into the facility to remain with their child. But most have had to stay away, which has been difficult.

“Never in his lifetime have we gone so long without being together,” says Rachel Amar, whose 17-year-old son Max has lived at Elizabeth Seton for the past 14 years. “This is an enormous and heartbreaking change for both of us.”

Before the pandemic, Rachel, who lives in Old Westbury, would come to the center every day to spend time with Max, who was born with a small lower brain stem and can’t breathe, move or swallow on his own. She’d attend school with her son and then spend several hours reading to him, snuggling and undertaking some of his medical care.

“I know that it’s because of my daily visits, hugs, tons of kisses, massaging, singing, touching, laughing and reading that he is actually living and thriving,” says the mother.

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