Teen's case adds to debate over brain death

Is she dead or isn't she?

Jahi McMath, 13, was declared brain-dead in December after her heart temporarily stopped during a tonsillectomy in Oakland, Calif.

The tragedy drew national attention when the girl's mother, Nailah Winkfield, persuaded a judge in January to allow her to remove the body from the hospital, still on life support.

The mother brought the girl to New Jersey, where the law allows a family to refuse to remove life support from brain-dead patients for religious reasons.

On Sept. 30, the case made news again. An attorney for the family filed suit in California, asking the court to rescind the death certificate.

The lawyer submitted statements from several doctors claiming that the girl is not brain-dead, that she responds to her mother's commands, that her brain tissue doesn't look like one would expect after nine months of brain death, and that she has begun to menstruate - evidence of brain function.

One of three neurologists who initially declared her brain-dead, Paul Fisher, has reviewed the filing and wrote the judge that he had seen nothing to change his mind.

McMath was in St. Peter's University Hospital in New Brunswick until last month, and is on a ventilator and feeding tube in an private home nearby.

The mother's lawyer, Christopher Dolan, did not return calls and did not respond to e-mail seeking an interview with the mother or a visit to see the girl.

In March, Winkfield came to Philadelphia to accept an award from the family of Terri Schiavo, the Huntingdon Valley woman whose removal from a feeding tube sparked a national debate in 2005.

"I'm going to fight for her until I have no more life left in me," Winkfield said of her daughter in March. "My hope is that she will change how people view brain death, and ultimately that she wakes up."

Three doctors on behalf of the family submitted statements to the court saying they had seen the girl or watched videos of her responding to her mother. The videos allegedly show the mother asking the daughter to move her hand and foot, and after several seconds, the hand and foot move.

"The videos leave no doubt that Jahi is conscious and can not only hear, but can even understand simple verbal requests . . . and make appropriate motor responses," wrote D. Alan Shewmon, professor emeritus of neurology at the medical school of the University of California, Los Angeles. He has long challenged accepted criteria for brain death.

Shewmon also claimed brain function is required for the pituitary gland and ovaries to start menstruation, and this alone should be evidence of the need to revise the definition of brain death.

"Corpses do not menstruate," he wrote.

Charles J. Prestigiacomo, chairman of the department of neurological surgery at Rutgers New Jersey Medical School, reviewed two brain scans. His statement on behalf of the family was more muted.

"It is my opinion that she has suffered a very significant brain injury which will most certainly lead to permanent and severe brain damage," he wrote for the court. "However, it is my opinion that, at present, she does not meet the imaging criteria for brain death."

In a letter to the court on October 6, Fisher, a Stanford University neurologist, said he found none of the statements or new evidence by the family's experts convincing. Fisher was asked by the court for an independent assessment of McMath's brain function last winter, and the court asked him to review the new filings.

He told Alameda County Superior Court Judge Emilio Grillo that any determination of brain death requires bedside examinations, and none of the new court filings included any evidence of such examinations.

"Videos of hand and foot movements, coincident with verbal commands, cannot affirm or refute brain death," he added, "and are not substitutes for in person, neurological examination."

He said none of the new material refuted his earlier finding - or those of two other neurologists - that McMath met all the criteria for brain death.

Larami MacKenzie, associate director of neurocritical care at Abington Memorial Hospital, is not involved in this case, but explained what goes into a determination of brain death.

In short, when doctors shine a light into the eyes, there must be no response. Voice commands must be ignored. When the patient is pinched or inflicted with pain, there must be no response.

When something is inserted down the throat, to trigger a gag reflex, there must be no response. When oxygen is denied, removing the patient from the respirator - what is known as an apnea test - there must be no response, no distress or hunger for breath.

If someone is brain-dead and the ventilator is removed, the lungs will not function on their own.

MacKenzie said accepted definitions of brain death were passed in all states more than 35 years ago in part to spare families the agony that McMath's family is undergoing now, and also to spare society the enormous expense of ventilator, feeding tube, and round-the-clock nursing care when hope is gone.

The family's lawyer, Dolan, on Oct. 8 asked for a hearing in early November. He wants his doctors to do these bedside exams, and then have Fisher at the hearing to question the plaintiff's doctors. Dolan hopes the judge will be persuaded that McMath is not brain-dead.

Thaddeus Pope, a lawyer who writes the Medical Futility Blog, said he believes this case is more about trying to redefine the boundary of what is considered brain death. But MacKenzie, the Abington doctor, sees harm in it.

"If this were my family," MacKenzie said, "I would never have let this go this far. This is a dangerous and scary development for all of society.

"Number one, we can't afford it. And number two, it's never going to help this girl."