Usually, I use this column to answer questions. Today, I will discuss the death of Jahi McMath and the new legal issues stemming from Jahi having been pronounced dead in California on Dec.13, 2013 and again on June 22, 2018 in New Jersey.
For anyone unfamiliar with Jahi’s tragic story, she was a beautiful, radiant 12-year-old girl who went to Children’s Hospital Oakland to undergo several procedures including a tonsillectomy, an adenoidectomy and a revision to her soft palate to address a condition known as apnea, which causes trouble with breathing. Jahi’s surgery, on Dec. 9, 2013, was seemingly without incident, and she was taken to the ICU for post-surgical recovery where her mother was present to comfort her.
At first, there was no sign of danger or complication. Jahi was given a Popsicle, as many post-surgical pediatric patients are, to help provide hydration and reduce any swelling or pain. Shortly after Jahi was in recovery, she started bleeding from her mouth. Her mother, Nailah, brought this to the attention of the nurses in attendance, and they said this was normal. They provided Nailah with a towel to help absorb the blood. Jahi continued bleeding, and the bleeding increased. Again, Nailah asked the nurses to have a physician come see Jahi, but again she was told that this was normal.
Jahi was scared and told her mother she was worried she might never wake up. Nailah assured her everything would be all right.
As the bleeding continued and increased, Nailah was given a tube to suction blood from the corner of Jahi’s mouth. Again, no doctor was summoned. Nailah called her own mother, Sandra Chatman, a wound care nurse, to determine if this was in fact “normal.” As soon as Sandra appeared, she saw Jahi’s critical state and demanded a doctor be called immediately. Sandra had to make several requests, and as a doctor was finally summoned, Jahi’s heart stopped because of the massive blood loss. The doctors tried to revive Jahi and after almost an hour, they gave up. They were about to pronounce Jahi dead when her heart started beating.
Because of Jahi’s severe blood loss and heart attack, she was deprived of oxygen to her brain and suffered a catastrophic anoxic brain injury, which led to swelling of her brain. The doctors at Children’s Hospital told Nailah that Jahi had irreversible brain damage. Nailah was immediately hounded by nurses trying to get her to sign a release so that Jahi’s organs could be harvested for transplant. Nurses even followed Nailah into the chapel as she tried to pray for her daughter’s survival.
On Dec. 12, 2013, Jahi was declared brain dead. Under California law, brain death occurs when there is a total and irreversible cessation of all neurological activity, including the brain stem. Nailah refused requests to remove her daughter from life support as she “knew Jahi was not dead.” Nailah said she could feel it in her heart and in her soul. The doctors then said they would remove Jahi from the ventilator despite Nailah’s protests.
Soon after, her brother, Omari Sealey, called me at 10:30 p.m. saying the hospital was going to unplug Jahi at 8:30 a.m. the following day. I knew nothing about the very public nature of Jahi’s case and turned on the television to see Omari on the phone to me. I agreed to write a cease and desist letter demanding the hospital stop their plans to kill Jahi. I agreed to represent the family, pro bono, and threw myself into a furious legal battle, one that I will never regret.
We succeeded in establishing, for the first time, that, contrary to the doctor’s position, parents do have a say in the end of their child’s life following a brain death diagnosis. Through a series of injunctions, we kept Children’s Hospital from killing Jahi through Christmas and into early January. A brain death exam was done by court-ordered expert Dr. Paul Fischer, which I observed. Jahi, in her weakened state was ruled brain dead. Jahi’s execution date was set only to be suspended at the last minute by a continued injunction based on the filing of an appeal of the brain death ruling from the Alameda County Superior Court.
Finally, a deal was brokered in late December to remove Jahi from the hospital. The hospital demanded the coroner take the body, so a disposition permit allowing Nailah to take Jahi’s being was required. A death certificate was required to obtain the disposition permit. Despite the acting public health officer’s initial refusal to issue a death certificate as Jahi was still on life support, we pressed forward and, under protest, obtained a death certificate.
While fighting the legal battle, I, along with a number of good-natured people of faith throughout the country, sought a facility to provide Jahi with the care she needed: antibiotics to fight off the infections she was allowed to develop at Children’s Hospital, a tracheostomy to put in a breathing tube and placement of a feeding tube. Every time we would find a facility, Children’s Hospital spoke to them and the facility would withdraw their willingness to accept Jahi.
Finally, we located a Catholic hospital in New Jersey. We kept the identity and location of this facility secret from Children’s Hospital so there could be no chance they might persuade the facility not to accept Jahi. We were in a race against time, as Jahi was dying from the lack of care at Children’s Hospital. The hospital had denied Jahi any nutrition for over 23 days. Under the cover of darkness, we spirited Jahi off to a private airfield in Oakland, and her mother accompanied her on a life flight jet to New Jersey. Jahi almost died in route.
The hospital’s retained experts and physicians swore in declarations that no care or intervention could forestall Jahi’s death, which was imminent. They were wrong. Jahi received intensive intervention in New Jersey and was ultimately discharged to a home environment where she lived with her mother, stepfather and sister for more than four years.
Over those four years, Jahi began communicating in response to her mother’s voice. She could move her fingers, hands and feet in response to requests by her mother and eventually could signal yes or no. This was all videotaped and a leading pediatric neurologist, Dr. Alan Shewmon, published a peer-reviewed article in the Journal of Child Neurology titled “False-Positive Diagnosis of Brian Death,” which concluded Jahi was not brain dead in 2018, although in 2013 she may have appeared to have been based on testing.
Additional peer-reviewed articles were published by experts, including Dr. Calixto Machado, a neurologist seen as one of the premier international brain death experts, which said that electroencephalographic testing showed Jahi had brain wave activity, and MRIs of the brain showed that while severely damaged, her brain was intact. In a case of total brain death, the brain liquifies and is absorbed into the body. This did not happen in Jahi’s case.
Legal proceedings in both state and federal courts were ongoing throughout this time to prove Jahi was alive. In a medical negligence case, judges repeatedly ruled that the facts created a triable issue of fact that Jahi was alive. As the brain death statute required there needed to be total and irreversible cessation of all neurological activity, the judges ruled there was evidence which should be presented to a jury for them to decide if Jahi was alive or not. Sadly, as that case was being prepared, Jahi died.
The death of Jahi has not ended the controversies surrounding brain death. An international debate is ongoing in the medical and scientific communities about whether brain death can be determined using antiquated testing while a patient is suffering from acute trauma. Indeed, I have personally helped other families deal with the brain-death diagnosis, including the family of Anahita Meshkin, who was diagnosed brain dead in the East Bay, for whom we obtained an injunction and an independent medical evaluation showing she was not brain dead. She would have, in fact, been murdered.
There are forces that desperately want to defend the brain death diagnosis: health insurance companies, who do not want to pay for treatment, the multimillion dollar transplant industry (which does save lives), and doctors who think they know the best uses of medical resources.
This is a debate which needs to be done out in the open as we age and our medical resources will be taxed. Doctors should not be able to use the brain-death diagnosis to do what they think is best. This strips the rights of the patients and families. What’s next, abort children with severe birth defects who are destined to die after absorbing tremendous medical resources? Terminate the elderly suffering from severe brain damage from Alzheimer’s because they are so damaged they cannot care for themselves, know what is happening, who they are, or otherwise have a “meaningful existence” or “quality of life”?
What I know is that Jahi was alive and that she and her mother, who is a hero of almost biblical proportions, living a life of persecution and sacrifice, like Job, had a real relationship of love and commination.
Jahi died on June 22, as evidenced by her New Jersey death certificate. Jahi did not die of brain death, but rather bleeding caused by liver failure. The legal debate now continues over which death certificate and which date of death controls.
What is clear is that, despite Jahi’s death, her name and her cause lives on. She has changed the way the world looks at brain death, stimulated widespread debate within the medical and scientific communities, and touched the hearts of millions. Like her mother, I regret not one moment of this fight for this beautiful girl.
Finally, I wish to share the words of her mother: “Don’t be in a hurry to unplug your people. Give them and God a chance to heal.”