ORLANDO, Florida — On the day Reggie Jacques was born, doctors at Winnie Palmer Hospital in Orlando told his parents that there was no hope, that his brain had gone too long without oxygen during his difficult birth. But Reggie refused to die.

On his sixth day, said parents Jean and Ruth Jacques, doctors urged them to remove Reggie from his ventilator. They said he would surely stop breathing. The couple agreed a month later. But Reggie wouldn’t die.

Around day 60, doctors asked the couple to sign a “do not resuscitate” order. They declined. And Reggie still refused to die.

For 95 days, Reginald Jacques refused to die.

But on the 96th day, Sept. 19, 2016, something felt wrong. Ruth Jacques surrendered to an irresistible impulse to hold her son after a day’s work for an Orange County social services agency. “I was driving the car like a madwoman,” Jacques said of her early evening trip to the hospital.

Jacques flew through red lights. Uncharacteristically, she left her car in a parking space for disabled drivers. She ran up three flights of stairs to the Neonatal Intensive Care Unit, where, she said, Reggie’s monitor was beeping, and he appeared to be in distress.

She picked up her infant son from his bassinet — all tubes and bandages and chirping monitors — and placed him gently on her chest. “With the little strength he had left, he lifted up his head and looked back at me,” she said.

“One minute later, his heart stopped. It was more like our heart stopped.”

Four years later, Ruth Jacques’ heart beats for two as she wages a campaign to demand answers from the doctor who delivered her son. She believes Florida’s state-sponsored Birth-Related Neurological Injury Compensation Association, or NICA, robbed her of the right to seek justice through the courts for the harm he suffered at birth and three months of agony as he fought for life.

Florida lawmakers created NICA in 1988, responding to obstetricians’ complaints that their malpractice insurance premiums were too high. The law bars parents like Jean and Ruth Jacques from pursuing lawsuits against doctors and hospitals when a baby is born with catastrophic, even fatal, brain damage from oxygen deprivation or asphyxia during childbirth.

If the birth injury meets NICA criteria, even in cases where the doctor or hospital may have made a glaring error, parents typically have little choice but to forgo a lawsuit and accept the program’s compensation, which consists of a $100,000 settlement upfront, and “medically necessary” and “reasonable” health care for the duration of the child’s life.

If the child dies, there is an added $10,000 funeral benefit.

The Jacqueses hoped to sue their obstetrician and hospital for negligence, only to learn from their attorney of the law that created NICA. Stripped of that right, they settled for filing a malpractice complaint with the Health Department. They received a form letter saying their complaint had been dismissed because the doctor’s actions did not violate the profession’s “standard of care.” There was no further explanation. Ruth Jacques said neither she nor her husband was interviewed by investigators.

The Jacqueses cannot appeal the investigation’s outcome, or even read about it, beyond the form letter. In Florida, those records are sealed and available only to the doctor.

That wasn’t the state’s only betrayal, Ruth Jacques said.

The day after Reggie’s death, overcome by anger and despair, she did the only thing she could think of: She printed leaflets warning prospective patients to stay away from Dr. Ricardo Lopez, the obstetrician who delivered Reggie. She said she handed them out in front of his Orlando medical office — and distributed a few to patients in his waiting room.

“I felt like the world was shutting me up,” she said. “I wanted to be heard.”

Ruth Jacques said she was silenced again. She learned that Lopez was free to do what she could not: file a lawsuit. Her attorney told her if she persisted in protesting she might end up a defendant.

A lawyer for Orlando Health, which owns Winnie Palmer and employs Lopez, wrote to the Jacqueses’ lawyer in January 2017: “I respectfully demand that Ms. [Jacques] cease and desist from further attacks on Dr. Lopez and [the hospital] regarding this matter.” Then the couple’s lawyer wrote to Ruth Jacques.

“I understand your anger,” the lawyer explained in an email. But, she added, “Any kind of verbal attack or public complaint about Dr. Lopez or Orlando Health could lead them to sue you and your husband personally.”

Lopez, who did not sue, declined to respond to the Miami Herald’s requests for an interview, forwarding the inquiry to Orlando Health.

Alayna Curry, an Orlando Health spokeswoman, said the hospital would not discuss Reggie’s calamitous birth, even though his mother has.

“Our medical team respects the wishes of our patients when it comes to their delivery experience,” she said in a prepared statement. “When a medical emergency arises during a delivery, time is of the essence and our physicians will speak with the patient about the recommended course of action.”

“You Better Push”

There is sharp disagreement over precisely what was said and when inside the delivery room.

Ruth Jacques provided the Herald a copy of her medical records, which contain a notation from Lopez that, based on “severe” fetal heart recordings, “a C-section was offered.”

“The patient refused,” Lopez wrote.

A nurse also reported “Pt refused C-section” in a notation dated two days after Reggie was delivered.

Jacques said she did no such thing, and the records do not contain a signed form from the mother refusing a C-section. The form is considered an industry “best practice,” but not a requirement.

In a 2017 letter to the state Health Department, Ruth Jacques said she insisted that Lopez never told her Reggie’s life was in danger.

“You better push, or you’re going to have a C-section,” she said she was told by the doctor. “In my understanding, he is threatening me [with] a C-section if I don’t push, not that the situation … was an emergency.”

Ruth Jacques did continue pushing, according to her medical records. Lopez attempted to deliver Reggie using a vacuum device, which popped off the infant’s head three times before the fourth pull succeeded.

Dr. Nicole Smith, medical director of maternal fetal medicine practice at Brigham and Women’s Hospital, Harvard Medical School’s teaching hospital in Boston, said in general the responsibility lies with doctors to explain their rationale and the benefits and risks of continuing in labor or moving to a surgical delivery.

“Mothers maintain the right to decline a C-section,” Smith said in an email, “but it is the provider’s responsibility to ensure that they understand the risks and benefits to the extent possible in what is typically a highly stressful situation.”

Smith did not review Ruth Jacques’ case or comment on the delivery.

Ethical guidelines of the American College of Obstetricians and Gynecologists also place the onus on the obstetrician to provide the patient with “adequate, accurate and understandable information.”

The group advises, however, that even a signed form does not guarantee that the ethical obligations of informed consent have been met.

Reggie’s parents believe their son would have lived had Lopez initiated a timely C-section, potentially preventing Reggie’s brain from being starved of oxygen. But they will never really know.

Like many NICA families, the Jacqueses said they had no idea that they had lost their right to file suit.

Ruth Jacques said she signed forms acknowledging that her doctor and the hospital had informed her of NICA before Reggie’s birth. But she didn’t read them. She said her OB-GYN had her sign them on her first appointment. At the hospital, the forms were tucked inside a stack of documents handed to her when she showed up in labor, distracted by impending motherhood, too late to change her mind and seek out another hospital.

After they lost Reggie and learned that a lawsuit was foreclosed, the couple said their sorrow would turn to outrage when they discovered that Lopez had a history with NICA.

Aside from Reggie’s case, the doctor has been named in four NICA claims, including two petitions filed prior to Reggie’s death. Not every NICA claim is accepted for compensation. But one of the first two lodged against Lopez was.

Two other claims were submitted after Reggie died. Those two were rejected because the newborns weighed less than 5.5 pounds — the legal threshold to qualify for NICA, a requirement intended to eliminate very premature babies from eligibility. In the case of a rejected claim, the family can sue. But none of the rejected claims has been followed by a lawsuit.

Being named in a petition does not mean a doctor committed malpractice — even if the claim is compensated. It only means that the case meets the narrow criteria of the no-fault program.

Bonded by Sorrow

If NICA families are members of an unenviable fraternity, families whose child died are its saddest chapter.

A total of 1,238 NICA claims have been made from the inception of the program through the beginning of April. NICA said at least 440 of those were accepted for coverage, which includes at least 143 from parents whose child had died by the time the claim was accepted.

Another 50 children whose claims were accepted for compensation died after they entered the program, NICA said in an email. Among those 50, the average life span after acceptance was 8.2 years. The oldest lived 29 more years. The youngest survived one day after the claim was accepted.

For some parents, NICA cannot provide what they want most: accountability.

There are practical considerations, said David Studdert, a Stanford University professor and expert in health law who co-authored a study of NICA in 2000.

Some of those families who were accepted into NICA likely would have gotten nothing had they been allowed to pursue a lawsuit.

But there is catharsis in discovering what went wrong, who is responsible — even in just being heard — said Kenneth Feinberg, a lawyer who has designed and administered compensation funds in the wake of some of America’s worst tragedies: the Virginia Tech massacre, the Sandy Hook Elementary shooting, the rampage at Pulse nightclub, Sept. 11.

The fund established after the Sept. 11 attacks was entirely voluntary, and 97% of eligible claimants opted to take the money, Feinberg said, forfeiting the right to sue. The program had an unusual feature: Claimants could appear before Feinberg or a staff member behind closed doors to express their grief; 1,500 did.

“All kinds of people came to vent, angry, not at the federal government. Angry at God,” Feinberg said.

Feinberg said many described the program as an exercise in justice, but he saw it differently. “I don’t think those words have much meaning when you’ve lost a loved one,” he said. “The best word I use is mercy.”

Reggie Never Cried

 

Jean Jacques’ father died in March 2015, on the same day the couple returned from their Caribbean honeymoon cruise, leaving them despondent and Jean Jacques as the lone male heir. They decided they wanted to become parents right away. They were hoping for a boy, someone to carry forward Jean Jacques’ father’s last name and legacy.

They found a house suitable for raising kids. Ruth Jacques’ family threw a baby shower. They painted the walls of Reggie’s nursery teal and gray, bought a brown crib and attached stickers of giraffes, lions and zebras to the walls.

On the morning of June 14, 2016, Ruth Jacques went to see her obstetrician for a regularly scheduled appointment. She said there was no indication that Reggie was ready for delivery. She drove to work at the social services agency where she was a neighborhood coordinator.

But the next morning, she woke up with a fever and tremors, so she went to Orlando Health Winnie Palmer Hospital for Women & Babies. There, her water broke, and she went into labor. Lopez had not been her obstetrician previously but was there for childbirth.

To Ruth Jacques’ ears, Lopez was accusing her of failing to adequately push what she later learned was a 10-pound baby.

When Reggie finally was born, he was essentially lifeless. His first two Apgar scores — measures of his vitality, on a scale of one to 10 — were zero and zero. He required four doses of epinephrine to start his heart.

“Normal babies, when they are born, they cry, they open their eyes,” said Jean Jacques, an Orange County Schools paraprofessional and full-time student at the University of Central Florida. Reggie did not cry.

He was placed on a ventilator — which doctors would recommend unplugging six days later, Ruth Jacques said. Bereft of answers, Ruth and Jean Jacques asked for a meeting.

It took place a week after Reggie’s birth, in a conference room near the intensive care unit, with a U-shaped wooden table. Ruth Jacques’ father, sisters, aunt and the family’s pastor joined the couple. She recalls a hospital lawyer standing against a wall opposite her and Lopez sitting at the head of the table, his arms folded across his chest. He didn’t look at her, she said. The doctor barely spoke.

What happened? she asked. Why was her baby on a ventilator with little to no hope of survival?

“He looked at me in the eye, and he said: ‘You did not want to have a C-section,’” Ruth Jacques said.

“And I said to him: ‘So, are you implying that I killed my baby?’”

Ruth Jacques said the doctor unfolded his arms and wrapped one under his cheek. He didn’t answer.

When the meeting adjourned, Ruth said, she met separately with a Winnie Palmer neurologist. “I was informed that my child would ‘never walk, talk or ever be able to do anything for himself. He would live in a vegetative state.’ ”

At first, the couple resisted removing life support. “We were praying that God would help,” she said.

But the strain became unbearable, the couple said. They said one doctor told them: “If you really believe in God, why would you do that to your child?” The family relented.

“That was the hardest decision for us to make,” Jean Jacques said.

Ruth and Jean Jacques and extended family members gathered round the newborn as a musician played soft and somber notes on a guitar. Someone recorded Reggie’s heartbeat on a disc and handed it to his father. A doctor shut off the ventilator, then pulled the breathing tube from Reggie’s mouth and throat, the parents said.

Reggie gulped for air. His mother covered her ears to muffle the sound of his gasping. Jean Jacques paced the floor. The couple fixated on Reggie’s heart monitor and the clock just above it. It seemed like hours, they said. And then, unexpectedly, Reggie began to breathe on his own.

His Finest Outfit

Reggie lived another two months. He never left the hospital.

He wore his finest dress-up clothes only once — the day his parents buried him.

He was laid to rest inside an impossibly small white coffin, dressed in a short-sleeved, buttoned-down shirt and a tie that was too big for his slender body. The tie and shirt were both white, the color of purity.

The couple buried Reggie far from their home, at Greenwood Cemetery. They didn’t want Ruth Jacques visiting her son daily. She needed time to heal.

But a year after her son’s death, Ruth Jacques took a job as a grants coordinator with Orange County’s government downtown, which is near Greenwood, a historic cemetery. Her son’s graveyard is visible from her office. The boy who lived 96 days was laid to rest near Orlandoans whose full lives gave them prominence, including a U.S. senator and two mayors.

Jean and Ruth Jacques preserved Reggie’s short life in pictures: His arms and legs stretched out like a wooden puppet from the contractures — a shortening and hardening of muscles and tendons — that brain damage wrought. An oxygen tube extended from his nostrils. In one photo, he appears to be looking directly at the camera, though the doctors had said he was incapable of such purpose.

Ruth Jacques found direction in her son’s death, vowing not to let the same thing happen to other parents.

She took to her keyboard, writing to state lawmakers. And to the Florida Justice Association, a group of lawyers who represent litigants like her. Her email to the trial lawyers recounted Reggie’s birth and death in detail. It covered seven pages and said Reggie “will always be a memory of a scar that will never truly heal.” There was no response, she said.

She wants Lopez to remember, as well. And so, she said, every year on Reggie’s birthday — and on the anniversary of his death — she files a new complaint with the Department of Health. It’s a symbolic act, but she wants to remind the doctor that Reggie lived, and that he died.

“He is going on with his life, while we the families are stuck on yesterday.”

Jean and Ruth Jacques, now 35 and 32, live in a modest home in Orlando. They’re raising the little brother Reggie never got to know, 3-year-old Raphael. Another child, Reynaud, was born on Jan. 15. The money she received from NICA will never replace the loss, Ruth Jacques said.

“That’s blood money,” she said. “It’s not going to bring him back.”