OAKLAND, Calif. — Video footage released this month of a girl declared dead by several doctors, a judge and a county coroner shows her moving her foot and hands, apparently in response to her mother’s request.

Now, the family of Jahi McMath is battling to have the 13-year-old’s death certificate revoked so she can obtain appropriate medical care, their lawyer said. In the process, they are raising troubling questions about just how and why doctors declare patients “brain dead” and revealing just how limited modern medicine’s understanding of the human brain is and of that most basic of medical events: death.

McMath first drew international attention last December, when a routine tonsillectomy at Children’s Hospital Oakland turned terribly tragic. The girl’s grandmother, a nurse, told reporters that Jahi started to bleed profusely from her mouth and nose before she suffered a heart attack and lapsed into a coma. Doctors at the hospital then declared Jahi “brain dead,” withdrew her feeding tube and requested the family consent to remove her organs for transplantation.

But the girl’s family won a court injunction to prevent the hospital from switching Jahi’s ventilator off and had her transferred, with their own funds, to an unidentified hospital in New Jersey and then into a home with her family, where she has been receiving 24-hour care ever since.

San Francisco attorney Christopher Dolan, representing Jahi’s family, held a press conference last week and showed a brief video of the girl wiggling her toes and apparently responding to the encouragement of her mother, Nailah Winkfield, to move her foot. Another video shows her moving her hand twice on command.

Wearing a T-shirt featuring her daughter’s photograph and “PRAY FOR JAHI,” Winkfield told reporters that her daughter can differentiate between right and left.

“We want the court to reverse [the decision] so we can restore this girl’s humanity,” Dolan told reporters. “The hospital has called her a corpse. Her name is Jahi, and she is alive.”

 

‘I’m Going to Give God a Chance’

Explaining his involvement in the case, Dolan told the Register he “took a call in the middle of the night last January, and it was people I’d never heard of asking for help. I said, ‘God, why are they asking me?’ And I knew I have the talents and skills to help them, and that’s what I’m doing.”

Dolan was deeply impressed by Jahi’s mother’s faith and determination to fight for her daughter.

“She was under tremendous pressure to consent to removing Jahi from the ventilator and donating her organs at the time,” he said. “But she said: ‘You are just doctors. You are just men in white coats. You had your chance with Jahi, and look what you did to her. Now, I’m going to give God a chance. You owe her the time.”

Dolan is working the case pro bono. Last week, he postponed a hearing in Alameda County Superior Court to consider overturning Jahi’s death certificate when court-appointed independent neurologist Paul Fisher of Stanford Hospital filed a letter the day before, reaffirming his prior diagnosis and dismissing the video and other evidence presented by the family as irrelevant and insufficient to prove the girl is not dead.

Dolan told the Register that he is instead taking time to try to “discuss Jahi’s condition in a medical context, rather than a legal context." He is not challenging the accuracy of the initial brain-death diagnosis, he said, but trying to demonstrate that Jahi’s condition has improved.

 

The Difficulty of Defining Death

But deciding if someone is dead or not in the 21st century is proving far more difficult than one might suppose. Fisher and the Children’s Hospital Oakland’s doctors are standing by their diagnosis of brain death, maintaining that Jahi’s movements are just random neurological reflexes.

“There is no factual basis or legal justification for requiring those involved to endure re-litigation of that properly reached determination,” hospital attorney Douglass Strauss stated in court papers.

However, Dolan said their predictions of Jahi’s brain liquefying have been discredited by experts at the nonprofit International Brain Research Foundation, who conducted MRI tests at Rutgers University that purportedly demonstrate that at least a portion of her brain is intact. As well, they claim to have measured electrical activity and found her actions are consistent with some level of brain function.

Certainly there are cases of patients of patients with poor prognoses who have made dramatic unforeseen recoveries. Shane Becker, for example, was featured in a recent episode of the Canadian Broadcasting Corporation’s Fifth Estate. He was 25 years old in 2006 when Canadian doctors thought he was brain dead after a serious head injury and his mother consented to his organ removal. But the procedure was delayed, waiting for his father to arrive to say good-bye, and during that time his mother, a nurse, noticed a slight squeeze as she held his hand and a constriction of his pupils.

In his case, the doctors did all they could to save Becker, who is today fully recovered and a father. But his case is especially significant because Becker could recall everything that was said about him in the room in his “brain dead” state. “I remember trying to communicate with them: ‘Guys, I’m here; I’m fighting; I’m going to make it.’ And I couldn’t, no matter what I tried. I remember an overwhelming sense of frustration.”

Recent research at the University of Western Ontario, Canada, is also finding that some patients in a “persistent vegetative state” (distinguished from “brain dead” patients by their ability to breathe independently) are far more cognitive than doctors have believed. One man, thought to be “vegetative” for 16 years, was able to answer yes or no to basic questions by following instructions such as imagining playing tennis (yes) or walking through a house (no) to produce MRI imagery similar to those of normally aware people. Now, they are using Alfred Hitchcock movies in MRI scanning to show that some — perhaps as many as one in five PVS patients — elicit the same emotional brain responses (such as suspense) as normal controls.

 

Other Vital Signs

University of Toledo neonatologist and pediatrician Paul Byrne, past president of the Catholic Medical Association, does not think even such diagnostics are necessary to prove Jahi is alive, however. He has examined her several times and believes her movements, other indicators such as her heart rate (which increases when her mother speaks to her), as well as the fact that she began menstruating after her diagnoses should be enough evidence of brain activity.

Byrne started investigating “brain death” soon after he decided to treat a “brain dead” newborn baby in the 1970s, who today is a healthy father of three. He became convinced that “brain death is a lie — a fabrication not based on any science,” but, rather, a “made-up set of criteria to procure organs for transplantation” from living donors — a procedure which only began in the 1970s, when terms such as “brain death” and “vegetative state” suddenly materialized to facilitate acquisition of organs before deterioration occurred, following the complete cessation of all vital functions.

He points to Pope Pius XII’s 1957 address to anesthesiologists, which states that “human life continues for as long as its vital functions — distinguished from the simple life of organs — manifest themselves spontaneously or even with help of artificial processes.” And the Catechism of the Catholic Church states that “…it is not morally admissible directly to bring about the disabling mutilation or death of a human being, even in order to delay the death of other persons” (2296).

Dr. Daniel Sulmasy, professor of medicine and ethics at the University of Chicago, however, believes that the Church recognizes “brain death” as legitimate and notes St. John Paul II’s affirmation of organ donation as a “generous gift” in an address the late pope delivered in 2000.

In the same speech, John Paul II commented, “Here it can be said that the criterion adopted in more recent times for ascertaining the fact of death, namely the complete and irreversible cessation of all brain activity, if rigorously applied, does not seem to conflict with the essential elements of a sound anthropology.”

 If Jahi were “brain dead,” with complete inactivity of her brain, Sulmasy said, her mother could morally and in good conscience decide not to provide treatment for her and to donate her organs.

However, Sulmasy agrees that resistance to reversing Jahi’s death certificate may also involve more than the reluctance of some doctors having to admit they were wrong and the embarrassment to the medical establishment. As well, “people want to save the appearance of accuracy of criteria of brain death,” he said, and its significance in a “background of pressure for organ procurement.”

 

Fighting for Patients’ Rights

Byrne added that he is not simply fighting against the “brain death” label purely for principle, but to secure rights for brain-damaged patients to adequate treatment as well. Jahi, he said, spent 28 days without any nutrition at a time when her body desperately needed it for recovery. He also claimed tests to establish her as dead involved removal of ventilation for up to 10 minutes at a time, to see if she would breathe on her own, and thereby could have caused further damage.

But worst of all, Byrne said, is that, as a legal “corpse,” Jahi’s mother was forced to scour the country for the only hospital that would care for her, and on grounds of anonymity, and Jahi has been deprived of the oversight of any specialist care while doctors and courts decide if she is alive.

Both Catholic doctors agreed that the decision to provide such care for Jahi should be left to her mother and that doubt about her condition should err on the side of life.

As Pope Pius XII told the anesthetists: “In case of insoluble doubt, one must resort to presumptions of law and of fact. In general, it will be necessary to presume that life remains, because there is involved here a fundamental right received from the Creator, and it is necessary to prove with certainty that it has been lost.”

Celeste McGovern writes from Scotland.