Leena, the daughter of Alexis and Daryl Stull, was born more than nine weeks early at WellSpan York Hospital on Nov. 18, 2019. She weighed just 1 pound, 9 ounces. She had trouble breathing and had to be attached to a ventilator. Just as the coronavirus pandemic was taking hold, she was transferred to Children’s Hospital of Philadelphia, where she got a tracheostomy, an opening in the neck that would allow her to move more normally while on the ventilator. That would let her get stronger and learn more quickly, her mother said she was told.

Then, when Leena was finally ready to go home on June 18, yet another hurdle loomed. She needed 122 hours of skilled home nursing each week — 18 hours on weekdays and 16 hours on weekend days. But the pandemic had worsened a long-standing problem for home care agencies: finding enough nurses capable of caring for babies who need high-tech equipment to survive.

Alexis Stull, 31, got so desperate that she mounted a social media campaign with Bayada Home Health Care. A post in July begged for night-shift nurses.

“I hope none of you ever have to know what it feels like to leave your child in a hospital. Let alone, leave her in the hospital for months for ZERO REASON only because you don’t have nursing at home,” Stull wrote.

“We are lost. We are sad. We are defeated. We are frustrated. We don’t know what to do. We just want her to come home.”

Leena finally went home to Chambersburg on Aug. 18.

The problem has gotten worse since last summer, agency and hospital leaders said. They cited competition for nurses from higher-paying hospitals, nursing homes, and vaccination programs. Some nurses, they said, quit or reduced hours to care for their own children.

Home care agencies are lobbying Pennsylvania leaders to increase Medicaid payments for home nursing. The current rates, they say, put agencies at a competitive disadvantage. Most children like Leena who need ventilators are covered by Medicaid.

Home nursing was “a mounting problem for several years before the pandemic,” said Meg Frizzola, a pediatric critical care doctor and chair of pediatrics at Nemours/Alfred I. duPont Hospital for Children in Wilmington. “Now we’re just at crisis level.”

Stull said that, on May 1, her family had 19 unfilled shifts for the month. Because someone always has to be awake for Leena, that has meant many sleepless nights for Stull and her husband.

Melissa Maranto, who befriended Stull while their babies were in the York hospital, has been looking for nurses, along with the hospital and area home-health agencies, for months. Her daughter, Lacey Bixler, was born at 25 weeks gestation — 37 weeks is considered full term — on Feb. 12, 2020 and has multiple medical problems that require round-the-clock care. Maranto said Lacey had been cleared to leave, but recently developed a new problem that will keep her at Hershey Medical Center awhile longer. Maranto said she only needs one shift of nursing a day so she can sleep. She and her partner, Blaine Bixler, have completed their home-care training, but “home nursing is practically extinct in my area,” said Maranto, who lives in Glen Rock in York County.

“I don’t understand how these babies are sitting in the hospital,” Maranto added. “It’s almost like these babies are in jail.” She has found a nurse who might be able to work six hours a day for a couple of months this summer, enough to tide her over with a friend’s volunteer help.

‘A pretty desperate situation’

The home nursing shortage is most acute for preemies born at 23 to 24 weeks who need ventilators, feeding tubes, and other mechanical support, Frizzola said. Her hospital’s 24-bed pediatric intensive care unit usually has five or six babies like this. They often spend almost a year in the hospital before they’re stable enough to leave. Because of difficulty finding home nursing, none leave when they are ready.

The hospital begins looking for home nurses as soon as babies arrive, Frizzola said, and starts searching more intensively about three months before discharge. Still, babies routinely wait an extra two weeks to three months in the hospital, and delays are increasing. One recently discharged baby had to return after scheduled nursing fell through.

Emily DiTomo, director of public relations at CHOP, said she could not find anyone at the hospital who could talk about this issue. A spokesperson for St. Christopher’s Hospital for Children said lack of home nursing has not delayed discharges at his hospital.

But Monica Cascarino, vice president of transitions at Penn State Health Children’s Hospital, said there is a “deficit” in home nurses willing to do pediatric shift care as opposed to the kind of “episodic” nurses who check on patients after surgery. She said children age 5 and under who need complex equipment are the hardest to place. The hospital had 19 such patients last year. They averaged an extra 60 days in the hospital after they were ready for discharge compared with three extra days in 2016 and 28 in 2019. The numbers are even worse so far this year, she said. While some children have stayed as long as a year past their discharge date, most can find nurses within three months, she said.

Insurers often stop paying when pediatric patients no longer need hospital care, Cascarino said. Hospitals can sometimes negotiate for some additional reimbursement while they wait “to provide a safe discharge,” she said. Residential facilities that specialize in children on ventilators are an option, but many families want their children home. “Those beds are not readily available either,” she said.

Cascarino said the hospital estimates it could make an additional $564,000 per year if it could discharge complex patients more quickly and fill their beds with more lucrative patients.

The home nursing shortage, she said, is “very frustrating on our end as well as the family’s end. … It is a pretty desperate situation.”

Turnover has long been high for long-term and home care providers, but hiring is now a bigger challenge at all levels, officials said.

Aides, who provide much of the hands-on care in facilities and homes, make an average of $12.75 an hour in Pennsylvania, said Teri Henning, CEO of the Pennsylvania Homecare Association. Michael Slupecki, chief executive officer of Griswold Home Care, said turnover among aides increased to 32% during the first quarter of 2021, compared with 20% during the same period in 2020. “Everywhere you go today, there’s a help wanted sign,” he said.

Hiring nurses is the biggest problem

But agencies that provide both aides and nurses said recruiting pediatric nurses is harder. The shortage is so severe that individual companies are now doing something that would have been unthinkable a few years ago: working with competitors to fill shifts. As a result, families end up with nurses from multiple agencies, which creates another set of complications.

“This is as bad as we’ve ever seen it,” said Todd Thiede, chief financial officer of Preferred Home Health Care and Nursing Services, which operates in New Jersey, Pennsylvania, and Delaware.

Officials from four agencies that supply pediatric nurses in Pennsylvania — Bayada, Preferred, Interim Health Care, and Aveanna Healthcare — said they are turning families away for lack of nurses.

Dave Totaro, Bayada’s chief government affairs officer, said that nurses are easier to hire in New Jersey, where the state’s private-duty rate is $60 per hour for registered nurses and $48 for licensed practical nurses. Pennsylvania pays the same rate for all nurses — $45 — even though RNs have more training. The rate, which has been raised only twice in 28 years, is all-inclusive, so agencies also have to use the money to cover benefits, protective equipment, and other overhead.

Totaro said Bayada this year has turned down 58% of requests for pediatric nursing in Pennsylvania because it didn’t have the staff. Aveanna has had to say no to 55% to 60% of its requests. Jill Peacock, vice president for clinical operations in Aveanna’s northeast region, said she knows of 35 children in the Philadelphia area who are either stuck in the hospital awaiting home nursing or unable to get all the care for which they’re eligible at home. She said some parents lose their jobs because of nursing problems or even have to move to be closer to nurses.

Night shifts are especially hard to fill, said Jim Border, associate director of a Bayada pediatrics office in Mechanicsburg. “The night shift nurse is really the needle in the haystack.”

Mike Zeshonski Jr., Interim’s head of staff and recruitment in northeast Pennsylvania, said he could place an additional 80 to 110 nurses. Thiede said he would hire at least 200 if he could find them. That compares with 30 to 40 openings last year. “We have so many families in need, we could offer each of those 200 nurses 40 hours a week without blinking an eye,” he said.

Some agencies insist on experienced nurses and won’t hire new grads. Those that do hire new nurses said they have to spend extra weeks training new hires now because students received less hands-on experience during the pandemic.

Agency leaders said it’s hard to lure nurses from hospitals where pay is higher and help is always near. Working with a sick child at home is scary. “You’re calling all the shots, and you’re by yourself,” said Susie Ecker, director of Bayada’s pediatric transitional care program. “Not many nurses have, one, that experience, and, two, have the courage and confidence to go in a home setting.”

Arielle and Chris Barnes of King of Prussia are deep in the nurse hunt now. Their 5-month-old son Owen was cleared to leave CHOP on May 13, but they and the hospital have been unable to find enough nurses, Arielle Barnes said. Owen was born full-term with a nasal encephalocele, a rare birth defect in which part of the brain protrudes into the nasal cavity. It impeded breathing and eating, so he needs a breathing machine and feeding tube. He will have surgery to fix the problem at about a year old.

Arielle Barnes had to quit her job as a store manager to take care of Owen’s twin, Emmett, at home and visit Owen at the hospital. So far, Owen’s development is only slightly behind Emmett’s.

Owen will need 24-hour nursing care for his first two weeks home and 16 hours a day after that. Arielle Barnes asked for help on Facebook a few months ago. Her post was shared 360 times. Some nurses were willing to help but not consistently enough to fill the schedule.

All the family can do now is wait.

“We just kind of feel helpless at this point,” Arielle Barnes said.