It started at midnight with a scream.

The scream was louder and higher pitched than usual for Hayden Mapp, a 4-year-old boy with brittle bone disease at Pediatric Specialty Care in Philadelphia.

A nurse walked calmly to his room to check on the boy, according to state investigators who reviewed the facility’s surveillance video.

The nurse asked Hayden, who breathed through a tracheostomy tube, if he was in pain, but he just kept screaming.

Hayden screamed for 30 more seconds, then coughed for seven seconds. Then, he stopped breathing.

Hayden’s nurse was caring for nine other children in those early morning hours of Feb. 4, 2018. The facility had only one respiratory therapist on duty, responsible for monitoring at least 18 children on the floor where Hayden lived.

State investigators would later conclude this was practice as usual for Pediatric Specialty Care, a 50-bed center in East Falls for medically fragile children who require round-the-clock care for conditions ranging from dangerous birth defects to traumatic brain injuries.

Hoping to clear Hayden’s airway, another staffer began to change the boy’s breathing tube. They started CPR and called 911. They attached him to a low-flow oxygen line, trying unsuccessfully to resuscitate him. When paramedics arrived, they noticed the staff should have been using the high-flow oxygen tank nearby.

Alerted by a panicked staffer, Nina Mapp arrived as paramedics were still doing CPR on her son. Hayden was declared dead shortly thereafter.

“I couldn’t process it. My baby is gone, and I didn’t get a chance to say goodbye,” Mapp would later say.

She sat in his room and held his body for an hour. “Sick, healthy — nobody’s child should go through that,” she later said.

He died of natural causes, she was told that night — osteogenesis imperfecta, his diagnosis from birth. But no autopsy was done and the doctor who signed the death certificate did so without seeing Hayden’s body.

“Hayden’s official cause of death is unknown; therefore it is not known what medical efforts might have saved his life," state investigators with the Department of Human Services (DHS) later wrote. The staff “responded with appropriate timing.”

Nevertheless, the department’s Office of Developmental Programs said that PSC, “through systematic failure to provide or arrange for adequate staffing, created conditions conducive to serious injury or death such as that of [Hayden].”

The unexpected death of Hayden Mapp did not unfold in isolation. It came 11 days after a girl in the facility died of sepsis after staff failed to address her symptoms for hours as the infection festered, state investigators concluded.

DHS downgraded its license in August 2018, halted new admissions, and subjected the center to twice-a-year inspections. The company appealed, challenging the state’s decision. “Our dispute was resolved in a manner satisfactory” to both parties, PSC spokesperson Chuck Hayes said Thursday.

In March, PSC agreed to improve its policies and have two respiratory therapists and a nurse supervisor at all times. The state agreed to allow admissions, go back to regular inspections, and restored its license.

“DHS remains confident in our ability to effectively regulate these and any other facilities to promptly address regulatory noncompliance and to take appropriate remedial action when noncompliance occurs,” said Erin James, DHS spokesperson.

Today, PSC Philadelphia cares for 39 children, down from 43 the night Hayden died.

“These kids were dishonored, deeply dishonored,” said Frank Cervone, executive director of the Support Center for Child Advocates. “They were left unsafe. Who does that to kids?”

‘Stopping ground’

PSC makes its money by caring for sick children who are stuck in the middle. The for-profit company operates five more centers throughout the state.

Most of the nearly 200 kids who have filled the East Falls facility’s beds since its 2014 opening have severe, long-term illnesses that require constant care.

They may be battling a severe illness since birth or the aftereffects of a severe car crash, or were born premature. They are stable enough that they don’t need the higher-level care of a children’s hospital but do require a great deal of medical care and monitoring.

“We’re kind of the stopping grounds for them while families can learn the intricate, complex care so they can provide for them at home,” said Ken Molczan, administrator of PSC Philadelphia.

The East Falls facility takes up the third and fourth floors of a former hospital on Henry Avenue. Inside, PSC’s bright orange and green walls are covered with pictures of fish and Philly street scenes painted by local schoolkids. A large play space on each floor is anchored by a huge aquarium.

The never-ending hum of medical equipment reminds anyone who may have forgotten: These kids are sick.

Advocates say medically fragile children in Pennsylvania preferably should be cared for at home. But given the state’s shortage of at-home nurses and the high level of care these kids might require, families often must rely longer than they would like on facilities like Pediatric Specialty Care.

For parents like Mapp, a North Philly mother who didn’t have a car, the East Falls facility meant they could see their kids more often. PSC’s major competitors — Pedia Manor and Firely Pediatric Services — operate at least 50 miles away.

“They don’t have a house that can accommodate the equipment or they’re people happening to be living in poverty,” said Rachel Mann, senior staff attorney at Disability Rights PA.

PSC also pulls in public funds caring for medically fragile children in the foster-care system.

In Philadelphia’s 2020 city budget, PSC as a whole is slated to get more than $850,000 to provide long-term care for children in the child welfare system.

In Lancaster, for example, the county paid the company $140 a day to place children at its Point Pleasant facility in 2015. Lancaster budgets showed that PSC also took in $400 a day for a child’s medical care billed to the state medical insurance. Altogether, about $200,000 a year per child.

Michael Burns, the CEO who oversaw all of PSC’s facilities from 2011 to May 2018, had a pay package of $475,000 a year. In January, he sued the company over pay he said was owed, and both sides settled. (Burns and his lawyer did not respond to requests for comment.)

Warning signs

There were warning signs at PSC all along.

PSC is required to notify the state whenever a child dies. The state said that since 2016, 14 children died at the six PSC facilities. Only one death was found to involve “regulatory violations,” said James, the DHS spokesperson. The state pointed to a death in February 2018, when Hayden died.

The state’s inspection records from at least 2015 show a pattern. In several cases in which a child was found unresponsive, staffers had delayed calling 911, documents show. In each instance, PSC promised that staff would immediately call 911 whenever there was an emergency.

The company promised it after an incident in 2015, when a nurse left an unresponsive child in a room and notified a doctor, instead of calling 911.

It promised that again in April 2016, after a nurse at the company’s Point Pleasant facility in Bucks County found an unresponsive child and alerted an on-call doctor instead of calling an ambulance. This time, the child died. “Neglect is confirmed,” wrote a state inspector, based on her review of surveillance footage and witness statements.

PSC made the same promise again a few months later after a child died on Sept. 11, 2016, at its Philadelphia facility. PSC said “we concede that there was a brief two-minute delay in calling 911,” but said that the child received immediate emergency treatment.

That incident was brought to the state’s attention only because a nurse reported it, alleging that her team had altered charts to cover up mistakes after the child’s death.

The state threatened to revoke the facility’s license but ultimately accepted PSC’s explanation that rather than a cover-up, the altered notes were late entries added "to correct an error or include additional facts in order to clarify the notes.”

As a result, the official report of the inspection no longer suggests any charts had been tampered with. PSC fired the nurse who had called the state, Carol Polowczuk, who then sued the company. They settled in April.

Polowczuk declined to comment, citing a confidentiality agreement.

The pattern continued to the evening of Jan. 24, 2018, 11 days before Hayden died, when a 2-year-old girl was rushed from PSC to St. Christopher’s Hospital for Children.

What directly killed her was sepsis, brought on by a tear in her small intestine that flooded her body with bacteria.

But state investigators ultimately concluded that the staff at PSC tasked with her care ignored her symptoms, letting the infection fester for hours.

That night, staff began altering the charts documenting their care of the toddler, according to investigators’ interviews with staffers. Notes in a PSC database were changed to say the girl’s condition worsened only after they had called for an ambulance, not before. Charts were edited to describe care that others said the girl hadn’t received.

Instead, staffers recounted they had begged nurses for hours to check on the girl. Others said that her heart rate had been high for hours and that she was running a fever as high as 104 degrees — red flags of a deadly infection.

A nursing supervisor said they were “trying to figure out what to do next” while waiting for some other supervisor to make the call. By the time she arrived at a hospital, the toddler was already in shock.

“PSC staff sometimes waited too long to send children to the hospital when they became ill,” one staff member told state investigators.

A DHS investigator said the delayed care was medical neglect that rose to the level of child abuse. No criminal charges followed.

“Unfortunately, it is a sad reality of the pediatric post-acute healthcare setting that some of the fragile children in our care will succumb to their illness,” Hayes said, adding that PSC could not comment on medical and personnel issues.

‘He’s gone’

Hayden arrived at PSC at 6 months, when his doctors didn’t believe he’d ever sit up or eat on his own, Mapp said. Still, she took him there hopeful that he’d be discharged before too long.

“I was like, maybe he'll spend some time in the facility and then come home to me,” she said.

“Nothing could ever possibly bring him back.”

Nina Mapp

At PSC Philadelphia’s grand opening, his mother told an audience that her son, the center’s third patient, was receiving good care. “I thank God for the doctors, the nurses and everyone involved here,” Mapp said, according to a report by WHYY about the opening.

A couple of years later, he could eat food — pureed baby food, mostly. He needed a wheelchair, but by the time he was 3, he worked out how to grab his ankles and scoot around on his bottom whenever he was on the floor.

“Oh my gosh, I never thought he'd be able to do that,” Mapp said. “He was so strong, he showed me how to be strong.”

But in the last year there, Mapp noticed changes. There were new staffers every week, and they seemed less experienced, she said.

When Mapp would visit, she said, her son would be sitting in soiled diapers and wearing dirty clothes.

More than a week after he died, regulators got a tip questioning how Hayden died. That same day, PSC voluntarily stopped taking new admissions.

A week later, a report about the girl who died from sepsis came into the state’s ChildLine, alleging medical neglect.

In the days that followed, the two DHS agencies that licensed PSC sent a 17-person team of nurses, inspectors, medical professionals and officials to the East Falls center to investigate.

It took both children’s dying and for people to report it as child abuse to garner this response, said Cathleen Palm, director of the Center for Children’s Justice.

“Particularly when it comes to children, we tolerate a lot regarding their safety and life before we make changes,” Palm said.

But James, the DHS spokesperson, said the problems at PSC "were not clear” and it required several months of investigation by experts and medical professionals to identify the “systemic issues.”

Today, Nina Mapp finally has her son home with her family. The urn that holds his ashes sits in a cabinet in the living room.

Mapp will never know what actually happened to her son, but she tries not to wonder what might have been.

“He’s gone. There are no what-ifs now,” she said. “He’s gone. Nothing could ever possibly bring him back.”