Viral video from toddler’s hospital room spurs debate over meaning of ‘brain dead’

ORLANDO, Fla. — Nayim Carter, 3, had a bright smile. When you walk inside of his parent’s home, a framed photo on a coffee table is a permanent reminder of that and his vibrant energy.

The world was introduced to the toddler in mid-June when his parents started a Facebook Live video as his father performed chest compressions in what he called a desperate attempt to save his son’s life.

WATCH: Suspect pulled from beneath car after 1 killed, 10 injured in Wildwood Father’s Day event shooting

Comments poured in, people questioning what was happening in the video, as chaos, screams for medical help and foul language ensued inside of the Nemours Children’s Hospital room.

“I was so helpless. The only thing I could was use my emotions in my words,” Nayim’s mother said.

The hashtag #NayimCarter quickly started trending on various social media platforms.

READ: Man convicted in Seminole County cold case murder facing charges in Hawaii cold case killing

What those watching didn’t know is that Nayim had been fighting for his life since last February, when he nearly drowned in a Polk County swimming pool.

9 Investigates requested a copy of the Polk County Sheriff’s Office investigative report to get more details about the incident. The investigator looking into the case provides extensive details, starting with the initial 911 call for service.

Deputies were dispatched to a two-story home in Davenport on Feb. 4, 2020. Polk County Fire Rescue paramedics immediately started emergency medical treatment on the then-2-year-old, according to the report.

READ: Woman shot in Orange County neighborhood

Paramedics determined he had no pulse and was not breathing as he was loaded onto a stretcher and transported to Florida Regional Medical Center.

Nayim’s mother, whose legal name is Kayla Higgs, but goes by “Amina Muhammad,” told the detective that around 5 p.m. she went to take a nap and rest because she had a severe headache.

The family told us they are prohibited from speaking publicly about the incident because they received a settlement in a lawsuit regarding the incident. 9 Investigates could find no public records related to the matter, and their attorney told us, “No comment.”

READ: ‘Friends’ actor James Michael Tyler announces stage 4 prostate cancer diagnosis

Nayim and her three other children, Muhammad told investigators, were left in the care of an adult family member. The caregiver told investigators that she took the older children outside to play football but didn’t realize Nayim wasn’t with them.

A short time later, she realized he had been left inside the house, and as she passed by the pool noticed he was face down in the water. A child protective investigator was also called, which is routine in these cases.

READ: American Airlines cancels hundreds of flights through mid-July

COMPLETELY DEPENDENT ON A VENTILATOR

The child was transferred to Advent Health because of the severity of his injuries.

The detective said he contacted hospital providers, who advised that Nayim was not responsive and completely dependent on a ventilator. CT scans showed an anoxic injury to the brain; however, chest X-rays didn’t show any sign of aspiration, which doctors believed to be abnormal for a drowning victim, and there was no fluid on Nayim’s lungs.

His mother believes that was a sign Nayim was fighting for his life.

READ: Watch: Suspect pulled from beneath car after 1 killed, 10 injured in Wildwood Father’s Day event shooting

“He, Nayim, was very determined from the time he was in my stomach,” she said.

In an email, an Advent Health spokesperson did not respond to any of our specific questions, and would only say, “The loss of a child is one of the most difficult things anyone will have to deal with, and our hearts go out to the family.”

We know from the law enforcement report, though, that doctors wanted to perform more tests, but Muhammad refused, because she told us she wanted him to have more recovery time because she felt God was going to heal him, and she strongly believed doctors would use brain death tests to take Nayim off life support.

READ: Body of 4th victim recovered after family tubing on NC river plunges over dam; 1 still missing

“Them having that ability to make that type of decision, regardless of us as parents and as humans to act in that way, you know, they shouldn’t be able to do that, regardless of them having a medical license. We’re still human beings and we all still have a constitutional right to life,” Amina Muhammad told Channel 9.

Six days after the accident, an Advent Health doctor told the lead investigator that Nayim’s mother had still not consented to a brain study and the hospital was awaiting her approval.

A registered nurse told the lead investigator two days after that, there was no change in Nayim’s status and his mother still would not consent to further testing. Per the hospital’s legal team, the staff couldn’t move forward until she consented, so they planned to continue care for Nayim.

READ: Florida woman surprised to find $1 billion in bank account

“He was urinating on his own, defecating on his own, his heart was beating. The only issue you have because of the lung failure, uh, was, was it, that was it, you know, so you had to have a ventilator,” his father, Alli Muhammad, said.

According to the law enforcement report, Amina Muhammad refused to allow doctors to perform brain death tests for a full month. When the test was done the public record we obtained showed Nayim had “very minimal brain activity,” but in doctors’ opinions, “not enough to sustain life.”

READ: 6-foot-tall, 183-pound giraffe calf born at Disney’s Animal Kingdom

The family told us they also refused an APNEA test, which most doctors believe provides a sign of definitive loss of brainstem function. But the patient has to come off the ventilator, which can cause cardiac arrest.

“Nayim proved that things can turn around for a person. And even when the situation looks diabolical, that’s just the surface, but internally it was everything it was going on inside him that was showing us that it was life there that he had determination to live,” his mother said.

READ: Netflix, Steven Spielberg make film deal

BRAIN DEATH DEFINED

9 Investigates could not find a local doctor willing to speak with us on the record for our reporting. Most are connected to one of the local hospitals involved, and some declined because the issue of who had the right to end a patient’s life is controversial.

So, we solicited input from the Director of Bioethics at Harvard Medical School, Dr. Robert Truog, who is also a professor of medical ethics, anesthesiology and pediatrics.

READ: Prime Day 2021 deals: What’s hot right now

“I think this is often very difficult for families because patients who are brain dead can look like other patients who we expect to survive. They need a ventilator to breathe, they’re non-responsive, they appear to be unconscious, but other bodily functions do continue,” Truog explained.

In 1968, a Harvard University Ad Hoc Committee on Brain Death started researching and analyzing “brain death” and what it meant. The final report helped reshape the definition because it led to the Uniform Determination of Death Act, which provides the bases for determining death.

States across the country used it to pass related statutes, the first being in Kansas in 1970.

READ: 17-year-old fatally shot at apartment complex near Mall at Millenia

In 1978, the National Conference of Commissioners on Uniform State Laws completed the Uniform Brain Death Act.

“The Uniform Determination of Death Act was created in 1981 to be a standard law that states could adopt so that all states were diagnosing patients as dead in the same way. It laid out the criteria for determining that a patient is brain dead, which meant that they had to have the complete absence of all functions of the entire brain,” Truog said.

Truog said some people now believe that this may be an antiquated way of looking at things because of cases and legal battles that have popped up around the country.

READ: 3 dead, 5 hurt in Father’s Day shooting in California

“There have been a number of legal challenges and they continue. And indeed, there’s discussion about whether the Uniform Determination of Death Act needs to be revised to address some of these concerns. One is whether patients actually can be considered to be dead based upon the loss of brain function, when other functions may continue,” Truog said.

In 2018, Dr. Truog and three of his colleagues published a report reviewing the last 50 years of regulations and ongoing issues in which the group examined and reported on the existing evidence regarding brain death.

Attorney Kevin Acevedo has represented families who have filed injunctions to try and stop hospitals from pulling the plug on loved ones.

READ: George Clooney, Kerry Washington, Don Cheadle co-found film academy for underserved LA students

“For the last 50 years, courts have declared these laws constitutional or valid, you know, from a constitutional perspective. The courts have decided that science needs to have the last say, the doctors need to have the last say on these issues because they’re very complicated issues,” Acevedo said.

When families file injunctions, Acevedo said, their main purpose is to try to buy time because they want to make sure that the process and the procedures are being properly followed, and they usually are, but people are entitled to question the process.

“You know, doctors can make mistakes, and medical facilities do often make mistakes,” Acevedo said.

READ: Royal Caribbean’s Freedom of the Seas embarks on simulated cruise

Nayim’s family never filed an injunction, but they told us they pushed Advent Health to release him because they wanted to care for him at home. He was ultimately released in a partial coma on a ventilator, and his mother converted his bedroom into a space suitable, in their eyes, for the 24/7 care he would require, decorated with selfies and all of his favorite cartoon characters.

Nayim’s mom told us he was still communicating in ways.

“Yes, he could have like, he responded to songs. His grandma would do exercises and Nayim would respond on count.”

READ: Supreme Court rules against NCAA in dispute over compensation for student athletes

“HE FOUGHT TO THE VERY END”

In December 2020, during a routine doctor’s visit, he was diagnosed with pneumonia, and his parents told us he was transported directly to Nemours Children’s Hospital, where the now viral Facebook Live was recorded.

The hospital would not speak with us about Nayim’s care because of HIPAA, but told us in a statement, in part, “Our hearts grieve with this family … We do everything possible for every patient in our care. Sadly, the outcome is sometimes not what we hope for … While we cannot comment on the particulars of this situation, we extend our deepest sympathies to the family.”

READ: Aircraft carrier shock test off Florida coast registers as 3.9 magnitude earthquake

Nayim had been under the care of doctors for six months. He was cleared to go home, according to his parents, at some point. However, they told us there was a shortage of home health care nurses and Nayim required that 24/7 care.

Though his parents told us they had long complained about the care he was receiving because they were concerned doctors weren’t doing enough as Nayim developed infections that were harder to fight because of his condition.

For some reason, unknown to us because we have not been able to independently review Nayim’s medical records, his heart stopped. Doctors and nurses had tried to save him prior to the start of the Facebook live that has now gone viral.

READ: George Floyd statue dedicated at Newark City Hall

The family pointed to vitals still going on a monitor in the room, as proof Nayim was still fighting. Doctors and nurses had left them to say their final goodbyes.

“I’m so proud of Nayim of how hard he fought to the very end. Like he was still fighting while we were doing CPR on him,” Amina Muhammad said.

It’s unclear who paid for Nayim’s care initially, but Medicaid and most insurance companies can stop paying for care once a patient is considered brain dead.

The medical examiner listed his cause of death as complications of resuscitated drowning, but toxicology results are still pending, which will show the family what was in Nayim’s system.