Jahi McMath, the Oakland teen whose brain-death case captivated the world while machines kept her breathing, was finally removed from those machines on June 22 in New Jersey after suffering from internal bleeding and kidney issues, her family and attorney said Thursday.
Nearly five years after California officially declared her deceased, the state of New Jersey has issued a death certificate, listing the preliminary cause of death as bleeding. Her body will be flown home to Oakland next week, her brain preserved for scientists to study, said family attorney Christopher Dolan.
The girl’s mother, Nailah Winkfield, who had rejected California’s conclusion that her daughter was dead, fought back tears in a phone interview with the Bay Area News Group on Thursday afternoon. Jahi was at Robert Wood Johnson University Hospital in New Brunswick, where she had undergone multiple surgeries since April.
“I’m devastated about losing my daughter,” Winkfield said. “Everything I did revolved around Jahi.”
Her long, chaotic legal and medical battle fascinated the country, pitting a hopeful, deeply faithful family against pragmatic medical science and bureaucracy. Ultimately, it took the McMath family to New Jersey, the only state where families can reject brain death on religious grounds.
It began on Dec. 9, 2013, at UCSF Benioff Children’s Hospital Oakland, when the then-13-year-old girl went into cardiac arrest after complications from a complex nose and throat surgery.
Two hospital tests showed she was brain dead. Doctors at Children’s Hospital planned to take her off a ventilator, but her family refused to believe she was dead and took the hospital to Alameda County Superior Court and won a ruling that allowed them to remove the girl from the Oakland facility.
Hospital officials and medical experts had no reason to believe machines would keep her heart pumping and her organs functioning for so long. To move across the country, Winkfield quit her job, sold her Oakland home and, for a time, left her other children in the care of family members.
“They gave her a diagnosis and she did not do what they said she was going to do,” her mother said.
VIDEO: This file video from October 3, 2014, shows a press conference with the family of Jahi McMath where they shared a video of Jahi moving her feet at her mother’s commands with the press. (Ray Chavez/Bay Area News Group)
Once in New Jersey, Jahi spent time in a hospital before her family moved into an apartment, where she received around-the-clock care from nurses in a room decorated with pink hearts and butterflies. Remaining on feeding and breathing machines, the girl matured through puberty and grew taller. Everyday, her mother would “wash her, comb her hair, do her nails, watch TV and explain what was going on.”
Jahi’s family released videos of her listening to Golden State Warriors games and showing her moving her fingers when commanded to as proof she could hear them. Every October, they celebrated her birthday: pictures show she wore a princess crown in 2016 for a sweet 16 celebration.
The controversial case became the subject of study by the nation’s leading neurologists. In April, it headlined Harvard Medical School Center for Bioethics’ annual conference, marking the 50th anniversary of the landmark report that set the medical standard defining brain death.
“The case was of national significance raising issues about parental rights, the accuracy of tests for determining brain death and the obligation of doctors and hospitals to accommodate parental decisions that they do not think sound,” said Arthur Caplan, founding head of the Division of Medical Ethics at NYU School of Medicine.
“These issues are now roiling the ethical waters of medicine law religion and bioethics,” Caplan said Thursday. “The McMath case was a unique outlier with unusual facts in many ways but its impact will reverberate through mainstream medicine for years to come.”
Jahi’s family’s fight inspired others. As Jahi’s story spread internationally, family members of patients in San Francisco, Contra Costa, Solano, Orange County and elsewhere also rejected brain death diagnosis given to their loved ones. The phenomenon became known as the “Jahi McMath effect.”
The great public debate about whether Jahi was dead or alive did not extend to the medical establishment. Noted neurologists said the three brain-death tests Jahi underwent, including one from an independent doctor, laid clear the loss of all brain function, an irreversible condition.
One exception was Dr. Alan Shewmon, professor emeritus of pediatrics and neurology at the University of California, Los Angeles. As recently as last year, Shewmon reviewed 49 videos of the teenager moving specific fingers at command and concluded she did not fit the criteria for brain death. The family also released an MRI they said showed she regained some brain activity.
Jahi “is a living, severely disabled young lady, who currently fulfills neither the standard diagnostic guidelines for brain death nor California’s statutory definition of death,” Shewmon wrote in a court declaration last year.
A court hearing on whether Jahi was alive was scheduled for next year, stemming from a medical malpractice lawsuit the family filed against Children’s Hospital and its doctors.
“I’m devastated about losing my daughter. Everything I did revolved around Jahi,” Winkfield said. “I think Jahi will be remembered forever because she defied all of the odds. My wish is for her to get some laws changed around brain death. I hope she’s taught people — stopped pulling the plug on your people. Give them a chance.”
“The only regret I have is taking her to get her tonsils removed,” she added.
Funeral services are being planned.