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.

This article was produced in partnership with the Miami Herald, which is a member of the ProPublica Local Reporting Network.

Ashley Lamendola was still a teen when medical staff at St. Petersburg General Hospital delivered the awful news that would change her life forever: Her newborn son, Hunter, had suffered profound brain damage and would do little more than breathe without help.

“It was like an atomic bomb went off in my life,” she said.

Lamendola believed the hospital was partly responsible for Hunter’s birth injuries. But Florida is one of two states that shield doctors and hospitals from most legal actions arising from births that go catastrophically wrong. Lamendola filed a lawsuit against St. Petersburg General anyway, and when it appeared she was gaining traction, the hospital advanced an extraordinary argument.

It suggested that Hunter’s mother was not acting in her son’s best interest and that a critical decision about his future care should be put in the hands of an independent guardian and a judge. Lamendola, attorneys said, was pursuing her own self-interest by refusing to participate in the quasi-government program that compensates the families of children injured at birth.

Under the program, known as the Birth-Related Neurological Injury Compensation Association, or NICA, the state provides $100,000 upfront and pays for “medically necessary” care for the child’s lifetime. In exchange, parents give up their right to sue hospitals and doctors, lawsuits that can result in judgments or settlements in the tens of millions of dollars.

By choosing to “pursue her own speculative, complicated civil lawsuit” rather than permitting her son to accept his “vested” NICA benefits, Lamendola was trying to profit from Hunter’s injuries, St. Petersburg General attorneys argued in a court filing. They underscored the words “her own.

Had she accepted Hunter’s inclusion in NICA, “the Mother would be unable to pursue her own civil lawsuit, seeking her own separate monetary damages for the Child’s injuries,” the lawyers added.

An excerpt from St. Petersburg General Hospital’s court filing in response to Ashley Lamendola’s lawsuit.

“You carry a child for nine months, and then you finally get to hold them — eventually in my case,” said Lamendola, who was employed as a customer service rep at an AutoZone when she gave birth. “And you take care of their every want and need, and you put a child before you. I mean, once you have a child, there is no more you. It’s them. It’s us. It’s that baby that needs you and needs everything from you.

“I didn’t understand how somebody who wasn’t me could know what he wants and needs. I knew every sound, every movement, every seizure that he had,” Lamendola said. “And to think that somebody thought they knew better than me. It was wild to me.”

The battle between parents like Lamendola and hospitals like St. Petersburg General can seem like a gross mismatch: Lamendola was a single mom who made $10.50 an hour and lived with her mother. HCA Healthcare, which owns St. Petersburg General, is one of the nation’s largest for-profit hospital chains, with 180 hospitals, 280,000 employees and revenues of $51.5 billion in 2020.

For hospitals facing stunningly high settlements or verdicts, NICA, the state’s no-fault program, is a valuable legal tool — a club to bat away expensive lawsuits. At the cost of $50 per live birth, hospitals can protect themselves from multimillion-dollar judgments.

Paolo Annino, who heads the Children’s Advocacy Clinic at the Florida State University College of Law, said attempts to restrict a parent’s authority through the appointment of a guardian are unusual: In child welfare disputes, for example, parents must be found unfit by a judge before being stripped of their right to decide what’s best for their children.

“What we have here is a scenario where there’s no allegation of offending parents at all,” he said. “The parent is, with very few exemptions, the one who makes the child’s health care decisions.”

NICA came under fire this month after a series of reports by the Miami Herald and the investigative reporting newsroom ProPublica. Families complained that the $100,000 grant — unchanged since 1988 — is inadequate, and that payments for medical procedures or equipment are routinely slow walked or denied entirely. After the articles were published, state leaders professed outrage and promised a comprehensive fix to the program.

Here is how NICA works: After a baby is born brain damaged, parents can file a lawsuit against the hospital and doctor. The defendants then can ask the judge to pause the suit and order the parent to file a NICA claim. That petition is heard in a separate venue by an administrative judge, who then decides if the case is “compensable.” Ultimately the administrative judge determines whether NICA applies or if the parents can resume their lawsuit.

To qualify for NICA, in addition to having physical and cognitive impairments, a child must weigh at least 2,500 grams (5.5 pounds) at birth and be delivered in a hospital. When children don’t fit those criteria, parents retain the ability to sue.

For the roughly 440 Florida children covered by NICA over the past 33 years, some of them now deceased, the program wasn’t really a choice. It was a mandate, with a few exceptions.

One exception is when OB-GYNs fail to pay a $5,000 annual assessment. Nearly 1 in 4 licensed obstetricians statewide does not pay. Another is when a hospital doesn’t pay its $50-per-birth fee.

Parents can also argue that they weren’t properly notified by their hospital or doctor of their participation in NICA with enough lead time to choose another provider. When parents like Lamendola attempt to invoke these exceptions, the fight can become fierce — and expensive.

Both the hospital and Lamendola’s obstetrician, Christina Shamas, declined to discuss Hunter’s case with the Herald.

One of the hospital’s lawyers, Jay Spengler, wrote in an email to the Herald that, for children who qualify for NICA compensation and coverage, “it is something that should be carefully considered, as it provides a child affected by severe birth-related neurological injuries a lifetime of necessary and reasonable medical services.”

In a deposition, Shamas defended her performance that day, saying that, as the “difficult” delivery progressed, she believed at that point that Hunter would be born just as quickly with a vaginal delivery — and the aid of a vacuum device — as he would a C-section.

Though Hunter’s heart rate declined significantly several times during the 80 or so minutes right before he was born, the fetal heart monitor also showed that it accelerated again, too, she said.

“This does not necessarily mean a compromised baby,” Shamas said.

Shamas also said that Hunter’s heart rate would improve when nurses administered oxygen to his mother, repositioned her in bed and gave her fluids.

Shamas said she took all the necessary steps to ensure Hunter was born healthy.

Floppy, Silent, Alive

It’s unclear how often lawyers representing doctors and hospitals accuse the parents of brain-damaged children of selfishness in an effort to force them to accept NICA benefits. Requests for guardians can occur anywhere in a family’s legal journey: administrative court, trial court or appeals court.

Richard Milstein, a past president of the Dade County Bar who has been appointed guardian ad litem in hundreds of disputes, said he was aware of no statutory provisions governing the appointment of guardians in NICA cases.

Generally, judges have discretion over whether to appoint a guardian, though Milstein said judges often rely on guardians to be their “eyes and ears” on matters involving litigants who can’t make decisions for themselves.

But when hospitals and doctors “question the wisdom” of parents making decisions about their children, “it is an offensive concept,” said Michael Freedland, a Broward attorney who represented Lamendola.

“It should send chills down the spine of every parent out there who is caring for a perfectly healthy child, or one who has special needs,” he said.

In its review of 1,238 NICA claims at the Division of Administrative Hearings, the Herald examined in detail 10 such cases but did not find any in which a guardian recommended a family be required to accept NICA compensation.

In one case, an Alachua circuit judge appointed a guardian ad litem to represent the interests of Nazyrah Jones, an Ocala child who suffered permanent brain damage when her heartbeat “essentially flat-lined” during delivery on May 13, 2008, a lawsuit alleged. Nazyrah’s guardian wrote in a 2011 report that “it would be in Nazyrah Jones’ best interests that this case proceed as a medical malpractice lawsuit.”

A Central Florida hospital told Ninoshka Rivera, too, that it knew what was best for her son, Kevin Terron-Otero. And what was best was NICA.

Due to oxygen deprivation, Kevin was born floppy and silent, but alive, on Nov. 4, 2009. The hospital and doctors thought it was a classic NICA case, though Rivera wanted to seek compensation through a lawsuit. As the process played out, the hospital asked an Osceola County Circuit Court to appoint a guardian to weigh in.

In a court brief, the hospital said it was concerned about the well-being of the child, fretting over “the staggering potential for loss to this child” if Rivera persisted.

The judge did appoint a guardian, but the guardian did not recommend that Rivera’s son be forced into NICA, freeing her to sue.

Rivera settled with the hospital’s insurer for $1 million. She is still in litigation with three doctors and two medical practices that have denied wrongdoing, court records show.

Luis Jimenez and Priscilla Franco experienced a similar fight.

The couple’s 2016 NICA petition was filed “under protest,” arguing that NICA’s lawsuit ban was unconstitutional. For its part, NICA determined the injuries to their child compensable in March 2017.

The parents continued to resist, alleging in August 2018 that son Dallas received substandard care in a manner that was “willful and wanton.” That’s another exception, though rarely used, to escape NICA.

In this case, it worked, enabling the parents to pursue their lawsuit in Miami-Dade Circuit Court. The hospital then asked the judge to appoint a guardian, with the familiar argument that the parents had demonstrated a conflict of interest with their son by turning down NICA’s guarantees. That request was rejected.

The malpractice litigation remains pending.

And when Sandra and James Shoaf spurned NICA’s one-time $100,000 payment and fought to pursue their malpractice suit, a hospital pointed out that their two-year separation — divorces are common among the parents of severely disabled children — left their daughter, Raven, especially vulnerable to her parents’ self-interest. The family was allowed to reject NICA benefits, and the hospital where Raven was delivered eventually settled with the family for $13 million, insurance records show.

Lucinda Finley, a University of Buffalo law professor whose expertise includes tort and equal-protection law, said accusing parents of seeking to profit from their children’s injuries is a form of emotional abuse — compounded by the fact that parents and their children are the victims of someone else’s potential negligence.

“Simultaneously devastating and enraging, infuriating,” Finley said. “I can imagine the parent saying this hospital whose doctors are responsible for killing or seriously injuring my child now has the audacity to say I don’t care about my child.”

She added: “These are not parents who are suddenly seeking to improve their lifestyle. These are parents who are suddenly faced with the crushing financial needs of seriously disabled children.”

Just Keep Pushing

An emergency C-section might have saved Hunter Lamendola from being deprived of oxygen and suffering permanent brain damage — and spared his mom from a lifetime of hardship, Lamendola said in her lawsuit. She said she had urged her obstetrician, Shamas, and the nurses who delivered Hunter on June 27, 2012, to initiate a cesarean section. Her mother, grandmother and aunt all had required C-sections to give birth.

Lamendola, then 19, soon began to suspect that Hunter was in danger, she testified in an August 2016 deposition. Nurses repositioned her several times, “propped” her up with a pillow and administered oxygen. They said they “couldn’t see the baby” on a fetal heart monitor, she said.

“I was worried about Hunter,” Lamendola said in the deposition.

“Every time I said I wanted a C-section, it seemed like nothing was done about it,” Lamendola said. “So I didn’t feel like I was really heard.”

The nurses, Lamendola said, were “dismissive” of her — at one point telling her to “just look at this smiley face on the wall and forget about” her pain.

When Lamendola asked again and again for a C-section, she was told to keep pushing, she said.

“Dr. Shamas said, ‘You need to continue pushing. You need to push with all your might,’” Lamendola recalled in her deposition. After Hunter emerged, Lamendola gushed blood. “Blood went all over the room,” she said. “It flung everywhere.”

Hunter was transferred quickly to the neonatal intensive care unit at All Children’s Hospital — now Johns Hopkins All Children’s — also in St. Petersburg. Lamendola did not get to touch her newborn son or catch more than a glimpse of his face behind a plexiglass incubator on wheels.

The emergency medical team from All Children’s that had rushed in to transport Hunter from the St. Petersburg General Hospital delivery room asked repeatedly if Lamendola had seen him.

“They said, ‘We want to bring him by your bed, so you can see him just in case it’s the last time,’” Lamendola recalled in an interview, choking back tears.

Lamendola said St. Petersburg General’s hospital staff moved her to a room beyond the nursery to spare her the sound of bawling babies and joyful moms.

Nurses taped a picture of Hunter to the wall, Lamendola said.

A day passed before Lamendola could see Hunter again — at All-Children’s — then a week before she could hold or touch him. All Children’s scheduled a meeting in a conference room adjacent to the neonatal intensive care unit, with a large wooden table surrounded by empty chairs, and a television cart and white board off to the side.

The first indication of where the meeting was going: a box of tissues on the table. The second: The hospital had arranged for a pastor to be present.

Hunter’s intensive care doctor broke the news. Hunter had sustained “global brain damage.”

“All the baby books don’t talk about that,” Lamendola said in an interview.

“Everything that I had planned or hoped. I didn’t know what could or would be possible, at that point.”

Hunter is blind. He cannot talk. He has reflux and cannot swallow. And he suffers almost daily seizures.

Lamendola filed the malpractice suit against Shamas and St. Petersburg General on April 24, 2013. The lawsuit was halted in July. Lamendola also was ordered to file a NICA petition.

On March 11, 2014, NICA told an administrative judge that Hunter’s injury was compensable. But the following August, the judge, Susan Belyeu Kirkland, ruled that Lamendola could reject NICA benefits because St. Petersburg General had failed to give her proper notice of its participation in the program.

Such notice can’t be given when a mother is already in labor and unable to choose another doctor.

“The policy of St. Petersburg General Hospital was to provide the NICA notice only when the patient [arrived] at the hospital and is admitted as an inpatient for delivery of her baby,” the judge wrote. In other words: too late for a mom to find another hospital.

The ruling opened a door for Lamendola to exit NICA. St. Petersburg General promptly moved to shut it.

With the dispute now back in Pinellas Circuit Court, St. Petersburg General asked for appointment of the guardian, arguing Lamendola could take millions of the hospital’s money — and then walk away from her son when he got older.

“The child is vulnerable given the Mother’s limited duty to only support the Child until the age of majority,” the hospital wrote. The court pleading underscored the word only.

Vivek Sankaran, director of the Child Advocacy Law Clinic at the University of Michigan Law School, noted that the hospital itself had a conflict of interest, since it would be off the hook legally and financially if Hunter became a NICA client.

“The law is clear that someone does not get to substitute judgment unless there is proof that you have fallen below a more objective standard of harming your child in some concrete, identifiable way,” Sankaran said. “It can’t simply be ‘we disagree with your assessment of what’s best for your child.’”

“The law builds in protection for us to disagree on matters of child rearing,” he added. “That’s what the constitutional decisions have always held.”

St. Petersburg General, through its insurer, would ultimately pay Lamendola $9.5 million to settle the case — after spending nearly $1.2 million fighting her, insurance records show. Shamas’ insurer paid another $250,000 to the family — after spending $400,000 in litigation.

According to her attorney Freedland, Lamendola is not allowed to discuss the settlements.

Devotion and Pediasure

Now 8, Hunter’s typical day begins at 6:30 a.m., when his mother prepares his breakfast: Pediasure, a liquid mixture of vitamins, minerals and protein, pumped directly into his stomach and small intestine through a plastic tube.

At 9 a.m., Lamendola gives Hunter his meds. About a half-dozen of them, sometimes as many as nine. At 9:30 a.m., she disassembles Hunter’s wheelchair and loads it into the car for occupational therapy at 10, followed by feeding therapy at 11 a.m. Lunch is at noon — more Pediasure in the pump — followed by 30 minutes in a contraption that builds muscle in Hunter’s paralyzed legs. Then a half-hour listening to the television, which blindness prevents him from seeing.

Lamendola’s mother takes care of Hunter when Lamendola is at work.

Hunter is more like a patient than a little boy, said Lamendola, who is more of a caregiver than a mom.

“It’s hard to be a mom now, because I have to be a therapist. I have to be a nurse. I have to be a doctor. I have to be everything that I should not have to be for him,” Lamendola said in a deposition. “I have to be a secretary to make all the appointments and cancel appointments when he’s sick.”

Hunter now has a little brother, Levi, who is a toddler.

“He is like a little Mama Bear to him,” Lamendola said in an interview. “When Hunter has a seizure, he rushes over and holds his arm and checks on him. When his feed runs out, starts beeping, he runs over and points at it to tell us to turn it off. He’s very protective of Hunter.”

Before the birth of her second child, Lamendola insisted that her new obstetrician agree in advance to a C-section. And she found a doctor who didn’t participate in NICA.

“Since I had Hunter — and I’m basically his advocate, and I am basically his words — I have learned to speak up for myself and say whatever I have to say,” Lamendola said. “I honestly don’t care anymore if I’m nice about it. I’m going to say my truth.”