Reforms Are Bitter Pill For Some Whose Kids Had Brain Injury

MIAMI (AP) — Leanne Lewis was sleeping late on her 26th birthday when she was awakened by the piercing sound of her mother-in-law’s screams: “Brady! Brady! Brady!”

Lewis’ 4-year-old son, BradyJ Lee Yarbrough, who had been stricken with catastrophic brain damage at birth, wasn’t breathing.

Lewis laid her son on a kitchen island and began chest compressions — one, two, three, four.. breathe, breathe, one, two, three, four.. breathe, breathe — as the doctors had trained her. When a police officer and paramedics arrived 10 minutes later to relieve her, Lewis glanced toward a corner. Her two other children had witnessed the horror.

That night, after Lewis had made arrangements with a Starke, Florida, funeral home, Lewis finally sat down with her adopted children, aged 4 and 6. “Do you remember when Cleo went to heaven?” she said of the family dog. “This morning, Brady got to go to heaven, too.”

Fighting tears, Lewis relived that day, April 20, 2019, last week at a board of directors meeting for the state-sponsored fund that had subsidized much of Brady’s medical care.

Florida’s Birth-Related Neurological Injury Compensation Association — despised by many parents, including Lewis, for its delays and denials of care — had just been overhauled by the state Legislature following an investigative series, called Birth & Betrayal, by the Miami Herald and the nonprofit newsroom ProPublica.

The reforms were broad and far-reaching, including an increase from $100,000 to $250,000 in the one-time “award” to parents entering the program. Along with their emotional scars, parents can incur massive debts raising — and losing — a child with severe disabilities.

While the reforms took care of the future, they frustrated parents like Lewis, whose child died while in the program two years earlier and therefore is no longer part of NICA.

It was, Lewis says, as if she didn’t exist. As if Brady never existed.

Caring for a profoundly disabled child was “the hardest job” Lewis ever held, she said. But no more difficult than watching a child die.

“We are both parents,” she told the board, referring to the parents of living and deceased NICA children. “Our children both exist.”

Lawmakers created NICA in 1988 as an antidote to obstetricians’ complaints that malpractice insurance premiums had become too burdensome. The law stripped parents like Lewis of the right to sue their doctors and hospitals when children are born with a specific type of brain damage resulting from oxygen deprivation or spinal injury. In return, NICA promises to provide all “medically necessary” and “reasonable” healthcare for the rest of a child’s life.

Since its inception, NICA has amassed nearly $1.7 billion in assets, fed by annual assessments paid by doctors. But parents have complained — and records confirm — that administrators assumed sweeping power over struggling families, arbitrarily denying requests for reimbursement, from medication to wheelchairs to therapy, and sometimes paying thousands in legal fees to avoid paying hundreds for care.

In June, Gov. Ron DeSantis signed legislation that transforms the program. The law was passed unanimously. A centerpiece was the $150,000 increase in the one-time payment to parents accepted for compensation, retroactive to all current participants. The law also set aside $10,000 annually for families’ mental health care.

Neither of those provisions will help Lewis, though, or the parents of about 215 other NICA children who died either before their petitions were accepted for compensation, or after. The decision, parents say, has left them raw with anger once again.

“Have you ever been faced with explaining to your very young children that they would never see their brother again, and that what they witnessed that day was their mother trying to save his life _ and failing?” Lewis told the seven-member board, which includes a NICA parent and an advocate for disabled children for the first time in its 33 years.

Last week, Lewis was one of nearly a dozen NICA parents who spoke to the new board. Half of those parents are still in mourning, even years later, from the death of a child. Several said they intend to keep attending meetings, which are being monitored by the state’s top insurance consumer advocate, until their pleas are answered.

They would like the $150,000 benefit extended to them, since they faced the same prohibition on holding their doctor or hospital accountable through litigation. Many of them were left financially impoverished by the strains of caring for a stricken child.

Lewis told the board she’d also like to provide her surviving children _ they are actually Brady’s cousins, adopted from foster care _ counseling to help them cope with their loss, as well as the trauma of that day. She’d like to speak to a counselor too, as the three antidepressants she’s taking have failed to assuage her grief. But she can’t afford it.

“I don’t have $150 per week for grief counseling, because I can’t afford insurance,” said Lewis, 28, who works in a dental office. “I’m not going anywhere. I’ll be back for your next meeting.”

‘We Are Broken’

Since NICA’s inception, about 1,240 families have filed compensation petitions. At least 440 of those were accepted for coverage, including about 143 petitions from parents whose child died by the time the claim was approved.

The other children whose claims were compensated died sometime after they entered the program, NICA has said. Those children had an average life span of 8.2 years after acceptance.

The parents of children who died at birth, or shortly after, were entitled to the same one-time $100,000 award as parents whose children are enrolled in NICA. And parents were given a $10,000 “death benefit” to offset the costs of a funeral and burial when their children succumbed to their injuries. Lewis said Brady’s funeral and burial cost $18,000 _ $8,000 of which she had to finance.

The new law did raise the death benefit to $50,000, and the parents of all deceased children were given $40,000 retroactively.

Beginning shortly after DeSantis signed the new law, several families filed claims with the state Division of Administrative Hearings (DOAH), where petitions for NICA compensation are adjudicated. They say the new law, which restricts the $150,000 supplement and $10,000 in mental health benefits to only current participants, is discriminatory.

Among those parents are Lindsey and James Johnson, whose son, Cooper Reilly Johnson, was born on June 13, 2017 _ and died eight days later from the oxygen deprivation he suffered at birth.

Excluding families like theirs assumes their “loss is a lesser burden than those whose children are still living,” the couple wrote in a court pleading filed exactly four years and one day after Cooper’s birth.

“NICA did not take into consideration that our lives are forever changed; we are not the same people we were the morning our son was taken from us. It has been almost four years since Cooper was born and died … and not a day goes by that we are not haunted by the image of our son dying in (our) arms, watching his heart take its last beat.”

“We are broken, and will always be broken,” the Winter Park couple, whose story was detailed by the Herald, said in a written filing.

The Johnsons’ appeal, which will be heard by Judge W. David Watkins, has yet to be set for hearing.

A similar petition filed by the parents of an Orlando child who died a year before Cooper was rejected almost immediately. On June 3, Ruth and Jean Jacques asked a different judge, Todd P. Resavage, to reopen their 2016 petition and extend the new benefits to them, as well. Resavage dismissed the petition, which allows the couple to refile their claim as a new case at DOAH.

“This trauma exists,” they wrote, for “those whose children were fortunate to live, and those whose children were not.”

In remarks to the board last week, Ruth Jacques said that “just because your baby is dead, it doesn’t mean you don’t deserve to be celebrated on Mother’s Day. That is insulting.”

She added: “I am not going away.”

One of NICA’s lawyers, Stephen Ecenia, told the parents he was empathetic to their plight. But, he added, what they were requesting is “entirely the province of the Legislature.”

NICA’s new board chairman, Jim DeBeaugrine, seemed to say the same thing in an email to state insurance regulators Thursday. DeBeaugrine said board members were listening to NICA parents’ concerns, but that some fixes “would require legislation.”

DeBeaugrine wrote that NICA’s interim director had been asked to “determine the financial impact” of paying $150,000 to about 216 families — an expenditure that would appear to be about $32 million. The money would come not from tax dollars but from NICA’s $1.7 billion in assets.

When asked by the Herald whether Chief Financial Officer Jimmy Patronis favored extending benefits to the parents of deceased children, a spokesman declined to answer. In a prepared statement, Frank Collins III said: “The CFO doesn’t think anything should be off the table when it comes to providing NICA families with much needed relief.”

Renee Oliver, one of the board’s new members, is raising a son in the NICA program. As the children of roughly half of the families compensated by the program are now deceased, she said during last week’s meeting, “any one of us could be in their shoes.”

Oliver sobbed as she beseeched her colleagues on the board to support the parents of the dead.

“Make it right for all the parents in NICA,” she said. “This is not a club any one of us wants to belong to.”

In an emailed statement, NICA administrators said they couldn’t discuss the pending legal claims from parents, but they “believe the bill sponsors took great care to listen to many current and former NICA families during the 2021 legislative session, crafting the legislation based on what they learned.

“NICA is implementing the new law for the benefit of NICA families as dictated by the Legislature, and will continue to do so with any future legislative enactments,” the program wrote.

Sen. Gary Farmer, a Fort Lauderdale Democrat who represents clients who allege medical malpractice as part of his legal practice and supported the legislation, said he doesn’t recall much discussion of making the benefits retroactive to the parents of all deceased children. Farmer said he favors doing so, and would back such a measure in the upcoming lawmaking session.

“The heartstrings,” he said, “are in favor of that.”

Constant Battles

Robin Grillakis’ son, Julian, spent nearly a decade as a NICA participant. Grillakis said she spent most of that time fighting the program. A log kept by NICA caseworkers — which was given to the Herald by Grillakis — confirms much of her account.

Julian was born Sept. 14, 2008, at South Seminole Hospital in Longwood, near Orlando. His first two APGAR scores — numeric measures of a newborn’s health — were zero and zero. He required resuscitation, and then a breathing tube, to survive.

Grillakis and her husband, Michael Grillakis, believed their son would not have suffered severe brain damage but for the actions of the medical professionals who delivered him. But their attorney insisted they had no choice under Florida law but to petition for NICA coverage. The claim was accepted in December of 2011.

Alayna Curry, a spokeswoman for Orlando Heath, which operates South Seminole, issued a short statement: “At Orlando Health South Seminole Hospital, the health and safety of our patients is our top priority, and we provide every patient with expert medical care during their stay.

“Due to federal privacy laws,” she added, “we cannot address a specific case.”

The friction between NICA and the Grillakis family began soon after the couple entered the program, and lasted for much of Julian’s life, his mother said.

The family fought over Julian attending an educational program for children with the neurological condition cerebral palsy, as well as gas money and tolls when his parents decided to send him there without NICA’s help.

They fought over who would pay for the boy’s dental bills. NICA agreed to pay for an anesthesiologist _ because many people with severe disabilities require a hospital setting even for even routine dental care _ but questioned everything else, records show.

The couple fought over a hospital bed, alternative therapies such as hyperbaric oxygen or stem cells, food for the boy’s feeding tube that wasn’t approved by Medicaid, Florida’s insurance program for needy or disabled people, and a therapist the family wanted to consult in Cocoa, Grillakis said. “All those things we had to do out-of-pocket,” she said.

NICA quibbled over the price of a wheelchair/stroller, and insisted the family pay $354 in addition to the $2,801 NICA was willing to pay _ out of a $500 discretionary fund parents were allowed to spend on therapeutic Christmas toys, the log said.

When Julian’s cerebral palsy made the boy’s legs become scissored and rigid, causing his hips to slide out of their sockets, the parents asked for permission to send Julian to an orthopedic surgeon in New Jersey who was the go-to specialist for a procedure designed to prevent the hip from dislocating.

But NICA was reluctant to pay for the procedure, which the program said was not the standard treatment. “Advised them we were trying to help them get care for their son,” a caseworker wrote of the dispute. “Stated several times that NICA wanted the child to have the care he needs.”

Bonnie Grillakis, Julian’s grandmother, said correcting the boy’s hips was especially important because Julian was nonverbal, incapable of telling anyone when he was in pain.

“Of course, they fought it and fought it,” Robin Grillakis said of NICA administrators. Eventually, NICA agreed to pay for one hip. But when Julian was being prepped for the procedure, the surgeon reported that both hips were “now shot,” the log said.

The surgeon recommended operating on both hips while Julian was anesthetized. But NICA administrators said the program would only pay for the one hip, Robin Grillakis said. Administrators wanted the boy to complete the one surgery, then go through the arduous process of getting permission for another.

“I said, `sorry, I’m not doing this to my son again,’ ” Robin Grillakis said. After she raised her voice, NICA relented.

“It’s always been a struggle,” Robin Grillakis said.

In February of 2018, the Grillakises took Julian to the hospital for a procedure on his digestive tract. A few days later, on Feb. 2, he died in his sleep. Robin Grillakis told her caseworker “blood was pouring” out of her son’s mouth and throat, the family’s log said.

Julian’s death ended the family’s constant battles with NICA. But a different pain endured.

The Grillakis family’s years-long struggle left the couple bitter and angry. But that’s not the reason, Robin Grillakis said, they deserve additional compensation.

The one-time payment, she said, was designed to relieve “pain and suffering.”

“We are still very much full of pain — and suffering every damn day,” Grillakis said. “Most families have their pain and issues, but at least they get to hug and kiss their babies every morning and every night. ”

I do not have that luxury.”

Hospitals And Love

Brady J Yarbrough was born on May 21, 2014. His delivery required five “pulls” from a vacuum extraction device, and he had to be intubated and ventilated in order to breathe, records say. Nine doses of epinephrine were required to start the boy’s heart.

Lewis said it took doctors 31 minutes to revive her son, and she could only watch helplessly as the medical staff formed a wall around the newborn.

Doctors cooled his body for three days, a treatment designed to stanch the damage to his brain.

The damage was so severe, however, that, even medicated, Brady’s seizures were serious enough to kill him. Brady, Lewis told the board, “lived a life full of hospitals, therapies, appointments, machines — and love.”

“I swear, our love kept him alive so many times,” Lewis told board members. “So many times I could see it in his eyes. He was so tired, but he held on so long it was like he knew I needed him in order to survive. As long as he was OK, I was OK.”

On April 18, 2019, Brady spent the night at UF Health Shands Hospital in Gainesville, recovering from a grand mal seizure in which he lost consciousness. On the 19th, Lewis brought him home, and he spent the day lying on a double recliner with his mom.

On the morning of Lewis’ birthday, she awakened to the shrieks of Brady’s grandmother. Lewis suctioned her son’s airway, and immediately began CPR until a rescue team arrived. When she diverted her eyes away from her son, she saw her other children were watching from a corner, stricken.

She knew her son was gone when paramedics refused to allow her to ride with him in the ambulance.

The following day was Easter. Her older child asked when Brady would be returning from heaven. He wouldn’t, Lewis said.

“You don’t get sick in heaven,” she told them. “You don’t have seizures in heaven. You can walk in heaven. You can talk in heaven. Everything Brady couldn’t do here, he can do in heaven.”

Brady was laid to rest with a stuffed bunny and a Stitch doll from Lilo and Stitch. His favorite toy, a little yellow duck named Chirp, now belongs to his sister, who sleeps with the toy nightly.

In her remarks to the NICA board, Lewis said: “Apparently, there is an expiration date on the pain and suffering that one experiences after losing a child.”

“Has the parent of a child who is still living suffered or lost more than the parent who has lost their child? I’m sorry, but I cannot make it make sense.”