After a year of pleading, Pereira said disability administrators told her they would consider removing him from the nursing home in May 2010. Before they could, he died.
“I didn’t have a choice,” Pereira said. “Now Bryan has passed away. What will I do with the rest of my life?”
The U.S. Justice Department has sharply criticized the state, saying it is warehousing disabled children like Bryan in adult nursing homes, violating their rights in the process.
Liz Dudek, head of Florida’s Agency for Health Care Administration, has vigorously disputed that.
“The bottom line is simple: Florida cares about kids,” she wrote to The Miami Herald. “We provide every medically necessary service and we are in compliance with the law.”
Officials with Golden Glades did not return phone calls seeking comment.
A second chance
Pereira, a psychologist in her native Brazil, was still grieving the AIDS-related death of her 5-year-old son Bernardo, who had hemophilia and had been given an infected blood transfusion, when she learned she was pregnant with Bryan. It was as if she’d been given a second chance.
But when Pereira was 27 weeks into her term — and on a trip to Miami — she suddenly went into labor. The consequences were calamitous.
Bryan suffered a hemorrhage, and spinal fluid flooded his skull. He began to experience seizures. Before doctors could insert a shunt to drain the cerebral fluid, he contracted meningitis, a life-threatening infection.
In the nursery at Jackson Memorial, Bryan’s head swelled, his eyes bulged. Pereira went to a local Catholic church to pray when she was interrupted by a parishioner. “A lady touched me. She said, ‘talk to me.’ ” The woman was a pediatrician at Miami Children’s Hospital, and Pereira transferred her son there.
“My son is dying,” she said. “I have nothing to lose.”
At Miami Children’s, doctors inserted two shunts into Bryan’s under-developed brain and fought his infection. And though he slowly recovered, the list of his final diagnoses proved to be long and terrible: cerebral palsy, mental retardation, blindness, seizures, severe reflux, asthma and hemophilia.
Medical professionals told Pereira to send her son to an institution. Instead Pereira — whose husband returned home to Brazil, leaving her with two small children — took him home, and organized her small Kendall apartment into a makeshift hospital.
For the next 18 years, Pereira kept detailed records of Bryan’s health and his often-cruel journey through the state’s medical and social service system.
There were visits to the pediatrician, the hematologist, the neurologist, the gastroenterologist and the child development experts. Physical therapists stretched and relaxed Bryan’s legs, and occupational therapists worked to keep his fists from becoming permanently clenched. Speech therapists helped him suck and swallow.
Doctors charted every milestone, though they were few, and far between. At one year of age, Bryan had the cognition and the fine motor skills of a one month old.
Bryan remained with his mother until he was about 6.
Pereira says disability administrators refused to provide her with enough nursing hours to enable her to both work and be a caregiver. Hospital case notes quote a case worker as saying Pereira “lacked the facilities at home to provide care for Bryan.”