The NICA program was intended to reduce doctors’ malpractice bills and provide a dignified existence and financial cushion for families crushed by the delivery of an infant with devastating brain damage. But some parents report a program that’s both indifferent to their fears and hostile to their needs.
COCOA, Florida — It is homework time at Ashley Grant’s house on a tidy, tree-lined street here. Grant places six crayons on a countertop. Her daughter, Brooklyn, still wearing her red school polo, sits in her wheelchair. She looks directly at a video camera and smiles.
“Four plus one is five,” says Kyle Stromquist, Grant’s boyfriend. “What about four plus two? How many is that?”
Brooklyn stares with purpose at a computer tablet displaying words and images and letters. As her hazel eyes gaze at the screen, the device gives voice to her answers.
Six, says the tinny, computer-generated voice.
“Bam!” Stromquist shouts. “Good!”
Brooklyn straightens in her chair and beams.
Brooklyn’s determination to learn is no surprise to the teachers who have observed her grit and resolve. They have come to embrace what her mom fought long to prove: that inside that broken body is a nimble mind.
“She’s smart,” Karen Rush, Brooklyn’s former special education teacher, said during videotaped testimony. “Never lets anything stop her.”
Not her disability. Not the expectations of strangers. And not the lawyers for a state-created program who fought for two years to persuade a judge that Brooklyn’s mind was as damaged as her body.
What Brooklyn’s mother sought was the chance to file a malpractice lawsuit against the medical providers who she believes made serious errors during Brooklyn’s birth. Such suits are severely curtailed in Florida under the 1988 law that created the Birth-Related Neurological Injury Compensation Association, or NICA.
NICA uses money from assessments paid by doctors and hospitals to offer parents like Grant an upfront payment and the promise of “medically necessary” care for the rest of a child’s life.
Grant believed her daughter had not suffered the severe cognitive disabilities necessary to qualify for the program.
To get her day in court, Grant would have to prove her daughter’s intelligence.
The legal battle over whether NICA could shield Brooklyn’s doctor and hospital from all liability would last 836 days.
There is a perverse irony at the root of NICA. Hundreds of parents facing financial ruin desperately want to get into the program but can’t because the circumstances of their child’s birth don’t fit the precise parameters. Maybe their son or daughter weighed 5 pounds, 4 ounces, instead of the minimum 5 pounds, 5 ounces. Others, mostly those whose children have the most severe disabilities, want out so they can try to impose a measure of accountability on their doctor by pursuing a lawsuit.
Those who want out of NICA sometimes meet M. Mark Bajalia, a lawyer for NICA and part of the legal and emotional gantlet they must successfully navigate. He has represented NICA in administrative court dozens of times, making him one of the program’s most prolific attorneys.
On Dec. 3, 2018, Bajalia came to Cambridge Elementary School — then Brooklyn’s school — to depose her teachers and therapists, who had reported that she was, as Rush said, “smart.” Under the law, Brooklyn’s neurological injuries at birth had to “substantially” harm both body and mind in order for her to be accepted by NICA.
Bajalia had never laid eyes on Brooklyn. And yet to the staff and teachers he interviewed, it seemed he was suggesting that they were embroidering her mental abilities.
“It’s your testimony as you sit here today that [Brooklyn] does not have any cognitive or intellectual impairment?” the lawyer asked Rush.
He was seeking to judge Brooklyn by standardized test scores, not by what her family and teachers knew by being with Brooklyn and watching her develop alongside her peers.
As Bajalia fired off pointed questions, the teacher had an epiphany: While Rush and the other educators, therapists and aides marveled at Brooklyn’s resilience, Bajalia seemed to her to see only the child’s flaws.
“You just want me to say what you want me to say,” she snapped.
Bajalia did not respond to phone calls and an email from the Miami Herald. Reporters also asked a NICA administrator to pass along a request for comment.
NICA was Florida’s answer to obstetricians’ complaints about the cost of malpractice insurance. Only one other state, Virginia, has a similar program.
Since NICA’s inception, families received a one-time $100,000 payment and a promise of lifelong care that was “medically necessary” and “reasonable,” as determined by the program.
In exchange, families could not sue the doctor or hospital. Aside from annual premiums — obstetricians paid $5,000 and hospitals contributed $50 per live birth — the medical providers paid nothing; the costs were borne by the fund.
NICA accumulated nearly $1.5 billion in assets.
Gov. Ron DeSantis signed a bill into law this week to increase the one-time payment to $250,000 after a series of reports by the Miami Herald and ProPublica documented how some parents felt NICA was hoarding money while depriving them and their children of services and support — from wheelchairs to modified vans to therapies that could improve their children’s lives. The law, designed to reform the program, significantly improves benefits for families.
Ashley Grant could escape NICA and sue the doctor, potentially for much more than what NICA would pay, but only if she could prove that Brooklyn was cognitively whole. When cases involving major birth injuries go to court, they can and often do generate millions.
“Brooklyn on paper is not who she is. She is very intelligent,” Grant said of her daughter, who turned 8 in April. “She shows you who she is by getting to know her. And you’re never going to see that on paper.”
Grant said it hurt to see the grilling over her daughter’s disabilities by a man who appeared to know little of Brooklyn’s struggles and triumphs.
“Obviously, it is devastating,” she said. “It didn’t matter to NICA. ... They don’t know who your child is. You can argue until you’re blue in the face. But they want to hear what they want to hear, and that’s it. They didn’t hear us telling them how intelligent she is.”
So, she had to prove it.
The quiet is pierced by giggles and a high-pitched primal scream. Brooklyn doesn’t like physical therapy.
She is wearing high-top sneakers in her trademark hot pink. Stromquist, Grant’s boyfriend, fastens orthotic braces on top with velcro. The braces — pink, of course — have been customized, decorated with ice cream cones, donuts, stars and unicorns.
Precious as they may be, the braces leave marks on her legs, especially after therapy.
Brooklyn wobbles on rubbery knees, gamely trying to stand upright, even for 10 seconds.
Stromquist, a Cape Canaveral firefighter and a father figure for Brooklyn, grips her tiny hands in his to steady her and speaks tenderly as he puts her through the grueling routine:
“Look at me. Look at me. Look at me. Look at me.”
“Lean forward like you’re giving Daddy a hug. ... If you want to walk one day, this is how you’re going to have to do it.”
Brooklyn betrays no bitterness that her vibrant mind is trapped inside an uncooperative body. As digitized voice technology advances, perhaps she will someday be able to discuss “hypoxic-ischemic encephalopathy” — one of her diagnoses — even if she cannot physically overcome it.
The sight of her in her wheelchair is jarring: That little body in a big person’s machine.
Brooklyn recently arrived home from school, her bright hair pulled back in a ponytail. Her hazel eyes danced over the computer screen. Juice, said the artificial voice. Brooklyn was thirsty.
She asked to sit on her mom’s lap.
It shouldn’t have been this way, her mother said. It didn’t have to be.
Grant was 23 and healthy, working full time as a sales associate for Bath and Body Works. Her pregnancy had been uneventful.
She expected to deliver at Wuesthoff Medical, now called Rockledge Regional Medical Center, a 298-bed hospital just southwest of the Kennedy Space Center. Dr. Hae Soo Lim — a 1993 graduate of the University of Florida’s medical school, whose obstetrics residency was at the University of Miami — handled the delivery when Grant’s water broke about 4 a.m. on April 1, 2013.
Doctors estimated Grant had been pregnant for about 39 weeks, making it a full-term delivery. She was given a drug commonly used to speed up contractions and hooked up to a fetal heart monitor to measure and record her baby’s vital signs, Grant alleged in court papers.
At about 8:35 that night, the monitor showed signs that Brooklyn was in trouble, the family alleged in court filings. By 9:57, the family said, the monitor had recorded three decelerations of Brooklyn’s heart rate — indicating the baby was in distress. The nurses overseeing Grant’s delivery failed to appreciate and act on the warnings, Grant’s court papers said.
Grant remembers a hospital staff surrounded and badly distracted by a major, messy renovation. “The hospital was under complete construction,” she said. “It was chaos. And I feel like they shouldn’t be able to have such chaos going on in a hospital when people’s lives are at stake.”
Eighteen hours in, Grant was told she was no longer dilating, her daughter was “sunny side up” — head down, facing inward — and unable to transition through the birth canal, she said. Brooklyn was delivered via an emergency C-section. But by then, Grant said, Brooklyn had sustained catastrophic neurological damage. Brooklyn had to be revived. She began to have seizures almost immediately.
At some point during labor, Grant said, the hospital and the doctor had thrust a stack of papers in front of her to sign. Buried among them was an acknowledgement of NICA. Grant said she signed it without understanding what it meant.
Grant did not see her daughter for three hours, she said. She could not hold her for seven days. While Grant recovered at Wuesthoff, her daughter was driven in a mobile intensive care unit to Florida Hospital, then to Winnie Palmer Hospital for Women & Babies in Orlando, the latter better equipped to handle a newborn with extensive neurological damage.
Within an hour or two, Grant said her obstetrician came into her recovery room and apologized. “She did say, ‘I’m sorry, I’m sorry.’ But that was it.”
Attorneys for the hospital declined to comment, adding that, “We can say that the health and well-being of our patients is our top priority.”
In court pleadings, Wuesthoff’s lawyers said the hospital bore no responsibility for any injuries Brooklyn sustained. “The injuries and damages alleged to be suffered by [Brooklyn] were caused by persons and/or entities over whom [the hospital] had no control or duty to control,” lawyers wrote, specifically mentioning Lim and a nurse, who did not work for the facility.
An attorney representing Lim, who works for the Florida Department of Health, said in an email that his client will not comment “on pending legal matters or individual patient cases.”
In court records, the Health Department, speaking for Lim, wrote that “it is not guilty of any negligence which was the legal cause of [Brooklyn’s] injuries.” DOH blamed Brooklyn’s brain damage on “acts or omissions by other persons, independent contractors, corporations, or professional associations or entities other than” the department.
To this day, no one from the hospital has expressed regret, Grant said. As for the doctor’s apology: “It’s not going to give my daughter the life that she deserved.”
Anyway, Grant said, she wants answers, not remorse.
Despite the restrictions placed by the NICA law, Grant began her quest to hold the hospital responsible. She sued the hospital and Lim in 2015. As happens in the NICA process, the judge suspended the lawsuit and required Grant to start all over, this time in front of an administrative judge, the kind that adjudicates NICA cases.
After 10 months, NICA made its standard offer: Drop the litigation. Collect $100,000 now and get Brooklyn lifelong medical care, provided it is “medically necessary.” The care would mainly come through Medicaid — Florida’s safety-net insurer for indigent and disabled people, which has frequently been accused of relegating patients to an inferior health care system.
NICA says it is responsible for anything Medicaid declines to cover.
But Brooklyn was already in Medicaid, and Grant had no desire to stay there. She already had grown weary of Medicaid’s denials of care and equipment — and she wanted her daughter to be treated by “the best” doctors, not just the ones willing to accept Medicaid’s low reimbursement rates.
Grant indicated she would reject the offer. Two months later, Bajalia was brought in to represent NICA’s interests. That largely involved trying to prove that Brooklyn was intellectually impaired, a finding that would force the family to accept NICA compensation.
Bajalia went to Cambridge to depose four of Brooklyn’s teachers, therapists and aides. They all marveled at Brooklyn’s mental abilities. Bajalia was not having it. He seemed to dismiss their testimony, Grant said, as the magical thinking of supporters who were personally and heavily invested in Brooklyn’s success.
The friction between Bajalia and Brooklyn’s teachers showed in the language they chose, including Bajalia’s use of the word exceptionality, as in “exceptional education.” “Exceptionality,” Bajalia said, is “just a politically correct way of saying because of her physically handicapped limitations.”
He asked Sheila Burkhardt, Brooklyn’s former speech pathologist: “Now, [Brooklyn] is in a normal classroom, correct?”
“A general education classroom, yes,” Burkhardt answered, emphasizing the words.
“I mean no disrespect,” Bajalia continued, “just because she’s in a normal classroom doesn’t mean that [Brooklyn] is normal, correct?” Normal is another term that parents of children with disabilities and their advocates find objectionable.
He asked about testing. Brooklyn had been tested well over two years before — when she was 35 months old — and that testing showed her significantly behind her peers. Why not judge Brooklyn based upon the tests? he asked.
“It’s considered old data,” Burkhardt said.
“It’s your testimony, as you sit here today, that [Brooklyn] does not have any cognitive or intellectual impairment?” Bajalia demanded of Rush, Brooklyn’s former teacher.
“I do not see her having any cognitive or intellectual impairment.”
Bajalia then asked Rush about Brooklyn’s physical disabilities: “You didn’t feel the need to test her motor abilities?”
“Obvious,” Rush interrupted. “She’s not going to stand on one foot. I’m not going to ask her to stand on one foot.”
“Come on up Brooklyn.”
An aide pushes Brooklyn’s wheelchair to the front of an auditorium on awards day. The other children fidget in their seats and whisper. One little boy raises his hand.
“Perseverance is the ability and self-control that forces you to work through challenges,” the speaker says. “Having perseverance means that, when you are facing a challenge, you use your mind and your body to overcome it. Perseverance means you are able to wait and to work through difficulties.”
“Brooklyn shows perseverance every day. She overcomes obstacles with grace and never gives up. She has taught the class what perseverance looks like. I am blessed to be her teacher, and her classmates have learned incredible things from her. She is an amazing little girl and I am so proud of her.”
The classroom erupts into applause.
The sparring with Bajalia, unpleasant as it was for Brooklyn’s teachers, helped determine the outcome. NICA had hired a neurologist, Laufey Sigurdardottir, to review the case, which eventually included the teachers’ observations. Her final report, dated Dec. 29, 2018, concluded that Brooklyn was not substantially mentally impaired.
She was, therefore, ineligible for NICA. An administrative law judge issued a final order dismissing the administrative law case in February 2019.
In an email, NICA administrators said the legal process in Brooklyn’s case worked exactly as intended: Two medical experts reported that Brooklyn met criteria for NICA participation. When Brooklyn’s mother disagreed, Bajalia elicited testimony “for fact-finding purposes, asking questions of each witness to better understand the circumstances of the case.”
“The initial medical review produced a determination that the child met NICA qualifications, information during deposition to explore that determination indicated otherwise, and, as a result, the medical experts changed their determination.”
Although it did not comment specifically on Bajalia, NICA said that the program’s lawyers question family members and other witnesses to gain information only, and that “sometimes those questions challenge the witnesses’ positions in order to draw out a full picture of the case.”
The statement added: “NICA expects all of its attorneys to act in a professional and respectful manner while representing NICA. NICA does not instruct its attorneys to portray children in any specific manner during these depositions, although we certainly hope and expect that children and their families will be treated with courtesy and respect.”
Michelle DeLong, one of Brooklyn’s lawyers, said Bajalia kept insisting that Brooklyn be evaluated by standardized intelligence tests, though Brooklyn was simply not capable of wielding a pencil — let alone filling in little bubbles for answers. “He got caught up in standardized testing to prove she was cognitively impaired.”
As to Bajalia’s language, “tone deaf is the right word,” DeLong added. “I think he really believed he was doing a good thing by offering these NICA benefits to Brooklyn, and he just couldn’t understand why the family wouldn’t take them,” she said, adding that the $100,000 NICA proffered fell far short of Brooklyn’s needs.
“It was a battle, because he could not put himself in the shoes of the family and understand their perspective,” DeLong said.
After more than two years, Ashley Grant had won the right to pursue her lawsuit, to try to hold to account the medical providers whose negligence she believes harmed her daughter. And though Grant’s exit from NICA was a victory for the 31-year-old, her quest is far from over. Her medical malpractice claim in Brevard County Circuit Court has been set for trial in June 2022.
She’s deeply in debt with Brooklyn’s medical bills, some already in the hands of collectors.
At least, she said, they have a chance. If she had stayed with NICA, “there’d be no justice for Brooklyn.”