Their boy lived 8 days. They’ll spend the rest of their lives wondering what went wrong

Carol Marbin Miller, Daniel Chang
·10 min read

Lindsey Johnson’s dreams began after her son’s life ended.

She is in an ambulance, rushing from her obstetrician’s office to the hospital for an emergency delivery. The frigid ambulance feels like a meat locker. The gurney rolls from side to side with each jerk of the steering wheel.

Lindsey Johnson tries to force a scream, then a sob, but no sounds emerge.

In her dream, she arrives at Orlando’s Winnie Palmer Hospital for Women & Babies, and the medical staff acts quickly to treat her. Her son, Cooper, squalls when he is born by C-section, a healthy baby.

This is where the dream and reality diverge: On June 13, 2017, Cooper Reilly Johnson was born with devastating brain damage. Eight days later, he died in his father’s arms.

Lindsey and James Johnson have been reeling in silent despair ever since — their voices muted by a Florida program called the Birth-Related Neurological Injury Compensation Association, or NICA. It prevents parents from pursuing a lawsuit when children suffer catastrophic brain injuries due to oxygen deprivation during delivery.

James Johnson, here with his wife, Lindsey, did not want their son to die alone. So he held the boy as medical staff slid the breathing tube from Cooper’s throat. Cooper’s heart beat on for about 15 minutes. Then, it stopped.
James Johnson, here with his wife, Lindsey, did not want their son to die alone. So he held the boy as medical staff slid the breathing tube from Cooper’s throat. Cooper’s heart beat on for about 15 minutes. Then, it stopped.

NICA was created to protect doctors and hospitals from multimillion-dollar lawsuits by distraught parents like the Johnsons.

Families sometimes sue anyway, but the lawsuits are halted by a judge while the dispute is routed to the Division of Administrative Hearings to determine whether NICA applies.

If a claim is accepted by NICA, the lawsuit is dismissed and parents are awarded a one-time payment of $100,000 — far less than the parent of a deceased or tragically brain-damaged newborn may receive in a settlement or jury verdict. The money comes from a fund supported by annual assessments charged to doctors and hospitals.

If the baby survives, it can mean lifelong disabilities and frequent, costly hospitalizations. Parents are promised “medically necessary and reasonable” health care for the child’s life. Upon a child’s death, during delivery or anytime afterward, NICA also pays $10,000 toward funeral expenses.

What NICA doesn’t provide is any kind of accountability or explanation to the parents of what went wrong during childbirth. And unlike lawsuits and malpractice complaints, which generally are available at local courthouses or online, NICA does not provide a way for prospective parents to research a doctor’s history with the program.

The Johnsons are haunted by questions that will never be answered.

Administrators for Orlando Health, which owns Winnie Palmer, declined the Herald’s interview request, citing federal privacy laws. But the company issued a prepared statement:

“We provide every patient with expert medical care during their stay. Our medical team respects the wishes of our patients when it comes to their delivery experience. 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.”

Barred from pursuing a lawsuit, the Johnsons applied for NICA benefits because they were suffering financially and needed relief. They’ve regretted the decision ever since.

“It hurts me that they can decide to put a price tag on my son’s life,” said James Johnson, an IT director for a large medical practice.

“We were kind of backed into the corner,” he said. Cooper’s medical bills had reached $12,000. Two months after Cooper’s death, Hurricane Irma damaged the couple’s roof and fence. The Johnsons were $50,000 in debt.

Though Cooper lived only a week, his presence is felt throughout the Johnsons’ Winter Park home.

James and Lindsey Johnson have matching inked tributes to their son.
James and Lindsey Johnson have matching inked tributes to their son.

A bookcase behind the couple’s gray living room couch holds a makeshift shrine: a baby picture, in which an oxygen tube is taped to Cooper’s nose; the frame reads “so loved.” Cooper’s nameplate from the nursery. A porcelain sleeping cherub, with the inscription “Mommy and Daddy’s Little Angel.” A black-and-white photo of Cooper’s tiny hand wrapped around his parents’ fingers. A figurine of Jesus.

On the mantel rests a baby blue teddy bear with a green ribbon around its neck. Created specially for the Johnsons, it weighs exactly seven pounds, 13.2 ounces — Cooper’s birth weight.

A memorial stone for Cooper was placed prominently in a garden the couple created this year. On a fireplace mantel rests an urn with their son’s ashes. They chose not to bury Cooper, dreading the thought he might be left behind should they have to relocate.

‘We held your hand for only a moment, but in our hearts you will be forever!’ One of many reminders in the Johnson home that Cooper lived, if only briefly.
‘We held your hand for only a moment, but in our hearts you will be forever!’ One of many reminders in the Johnson home that Cooper lived, if only briefly.

The couple have matching forearm tattoos. His reads “Cooper,” next to replicas of the boy’s footprints. On her arm, Cooper’s name is the spine of a green and yellow butterfly.

A Roller Coaster

On the day their son was born, Lindsey and James Johnson went to her obstetrician’s office for an appointment. An ultrasound, the couple said, left everyone in the treatment room worried. Cooper wasn’t moving.

Lindsey’s obstetrician immediately summoned an ambulance, and gave instructions that Cooper be delivered by C-section as soon as the ambulance arrived at the hospital. The nightmare — the real-life one — began.

“I asked if I could ride with them,” James Johnson said. “They told me no.”

He could hear his wife screaming for him as paramedics shut the back door.

Lindsey Johnson recalls the ambulance being uncomfortably cold and bumpy. Her husband, “freaking out,” hopped in his car and gave chase, fixing his eyes on the ambulance as it got smaller and smaller. “They can break laws that I can’t break.”

When the ambulance met heavy traffic in the westbound lanes of Highway 50, it veered into the eastbound lanes — driving directly into oncoming traffic — to make time.

The expectant mom remembers the ambulance stopping at the wrong hospital — the children’s hospital, instead of the adjacent medical center where babies are born — wasting precious minutes.

By the time James Johnson caught up, his wife was inside the obstetrics ward. There, he encountered a surprising scene. Everyone was calm.

A nurse told him everything was fine. The hospital would induce labor. There was no need for a C-section, he said he was told. He said the hospital staff helped him slip into a medical gown and took pictures for the couple’s photo album. But when the medical staff pierced the baby’s amniotic sac, records show, they found blood and meconium, the latter an infant’s first body stool, which can be extremely dangerous to the baby if inhaled.

Then the couple was plunged into panic again. The obstetrics staff rushed Lindsey Johnson to the operating room.

“I was praying silently to God,” Lindsey Johnson said. “Please, Jesus, don’t take my baby.”

James Johnson said: “It went from the scariest moment of my life, where I’m in shock, to ‘this is great. I’m going to be a dad today,’ back to being the scariest moment of my life. I was scared out of my mind.”

Lindsey Johnson’s hospital records show her obstetrician dictated at 3:58 p.m. that the expectant mom was leaving the medical office via ambulance “to take patient to hospital and perform stat C-section.” Hospital records say she was admitted at 4:15 p.m.

Preoperative notes say that Lindsey Johnson was “given the option” of a natural or surgical delivery and chose to allow doctors to pierce her membrane to test for signs of fetal distress. Amniotic fluid showed signs of a ruptured placenta, a dangerous possibility. “At that particular point,” the note says, “the patient decided to proceed with a Cesarean section.”

The exact timeline for the procedure is unclear, but it appears the C-section began around 4:45, and delivery occurred very quickly.

James and Lindsey Johnson walk Mako and Kona through their Winter Park neighborhood. The dogs bring the couple much joy and have helped assuage the grief over the loss of their son.
James and Lindsey Johnson walk Mako and Kona through their Winter Park neighborhood. The dogs bring the couple much joy and have helped assuage the grief over the loss of their son.

At first, the Johnsons did not realize how badly Cooper had been injured. “When he first came out, he was moving, making some noises,” James Johnson said. But the family later was told that Cooper’s placenta had been severed, and he had lost more than half his blood.

Hospital staff brought the newborn over to his mother’s bed to “introduce” him, James Johnson said. They took more pictures at bedside, and then brought Cooper over to the neonatal intensive care unit. As the staff rolled Cooper down the corridors, they tried to explain to the new father what was happening.

“But I was in such disarray,” he said. “I had no idea what they were saying and what it meant.”

‘More pain meds’

Cooper was placed on a ventilator, and then wrapped in a cooling blanket to stanch severe brain damage. He was given a blood transfusion.

On about Day Seven of Cooper’s life, hospital staff performed magnetic imaging of his brain. The news could not have been worse, the Johnsons said. Cooper would never breathe without mechanical support. He would never gain consciousness.

“And then Day Eight is when we decided to take Cooper off the ventilator,” his father said.

“I couldn’t make the decision,” Lindsey Johnson said. “I was like, you have to do it. … Give me more pain meds, so I don’t remember this.”

“It was, by far, and will always be, the hardest choice I ever made,” James Johnson said.

He did not want his son to die alone. So he held the boy as medical staff slid the breathing tube from Cooper’s throat. Cooper’s heart, which had been undamaged, beat on for about 15 minutes, James Johnson said.

Medical records say Cooper likely suffered a placental abruption, where blood and oxygen stopped flowing to his brain.

Lindsey Johnson’s nightmares started soon after Cooper’s death — followed by therapy for both parents.

They filed the NICA petition on Jan. 18, 2018.

“I wanted to fight it,” James Johnson said. “But seeing what Lindsey was going through, barely being able to get out of bed because she was so depressed, I thought it was the best thing for us to just sign the paperwork and be done with it.

“And I regret that.”

Administrative Law Judge W. David Watkins signed an order awarding the Johnsons $110,000 on May 24, 2018. The entire process took a little more than four months.

The Johnsons soon began to question their decision and whether what happened to Cooper could have been avoided. Why didn’t the hospital wheel Lindsey into the operating room the minute she arrived? Would Cooper have been uninjured, or at least survived, if the obstetrics staff worked more quickly? They will never know.

There was no autopsy.

Sixteen months after Cooper’s death, on Oct. 1, 2018, James Johnson posted a petition to the website Change.org. Directed at then-Florida Gov. Rick Scott, it included six separate parts, mostly intended to hold obstetricians responsible for their mistakes, to better compensate parents accepted by NICA, and to make NICA more transparent.

On the couch at the Johnsons’ home in Orlando rests a baby blue teddy bear with a green ribbon around its neck. It weighs seven pounds, 13.2 ounces — exactly the same as Cooper at the moment of his birth.
On the couch at the Johnsons’ home in Orlando rests a baby blue teddy bear with a green ribbon around its neck. It weighs seven pounds, 13.2 ounces — exactly the same as Cooper at the moment of his birth.

Since he was barred from pursuing a lawsuit, James said he launched the petition because he wants to know if mistakes were made in relation to his son’s birth and death, and, if so, that those responsible be held accountable.

Among the 2,099 signatures were a handful of parents who said they too had lost children.

“I am signing this because I lost my son,” wrote Ruth Joseph Jacques, adding that the doctor who delivered her boy, Reggie, who lived 96 days, “did not give a world of care, cause he is protected. Let’s remove the sheet of protection, together.”

It changed nothing. The state law that created NICA has not been meaningfully amended in nearly two decades.

“We got no justice,” Lindsey said. “I don’t want this to happen to anybody else.”

Last rites

“He was absolutely gorgeous,” Lindsey Johnson said of the son she carried for nine months but knew for only eight days.

It was long enough for Cooper to be baptized and given the last rites.

A porcelain sleeping cherub — inscription: ‘Mommy and Daddy’s Little Angel’ — is a constant reminder of Cooper.
A porcelain sleeping cherub — inscription: ‘Mommy and Daddy’s Little Angel’ — is a constant reminder of Cooper.

But their son’s birth, death and all that followed has undermined their faith.

“We were very active in our church,” she said. “We lost our relationship with God.

“And we haven’t been to church since.”