Justice for JahiOriginal Article
In California, Jahi McMath is legally dead. In New Jersey, she is legally alive. Now, the deceased—or profoundly disabled—teenager is the subject of litigation that could make history.
A quick rundown: In 2013, the then thirteen-year-old girl suffered a cardiac arrest after undergoing throat surgery. Jahi’s brain was deprived of oxygen, and her doctors at the highly respected Children’s Hospital Oakland declared brain death and pushed to have all life-sustaining medical treatment terminated. Jahi’s mother, Latasha “Nailah” Winkfield, would have none of it. She sued to keep her daughter’s life support maintained.
In court, doctors testified that Jahi’s total brain failure was irreversible, and that even if her body were medically sustained, it would soon deteriorate. After an independent physician from Stanford University confirmed that diagnosis, Superior Court Judge Evelio Grillo declared Jahi legally deceased and authorized California to issue a death certificate. But a settlement allowed Nailah to take possession of Jahi, still attached to medical machinery. Jahi received further treatment in a New Jersey hospital and was then released to her mother’s care.
At the time of the tragedy, I believed—and wrote here—that Jahi was, indeed, dead. But I now have strong doubts. It’s nearly four years later, and Jahi’s body still has not broken down. Her skin remains smooth. There are no foul odors in her room as would be expected when a brain-dead person’s body deteriorates. She has experienced no visible bodily decline. I know. I saw for myself when Bobby Schindler (Terri Schiavo’s brother) and I visited Jahi and Nailah a few weeks ago.
Of course, I’m no physician. But there are expert medical opinions supporting Nailah’s position, most notably from the respected neurologist Dr. Alan Shewmon. Shewmon, professor emeritus in pediatrics and neurology at UCLA, has testified that Jahi’s condition does not currently meet the criteria for brain death. From his testimony (my emphasis):
Upon transfer to St. Peter’s Hospital in New Jersey, she received the tracheostomy and gastronomy feeding tube that were refused in Oakland. She received the enteral feedings that her gut was supposedly unable to handle and that would only be deleterious.
With proper nutrition and other treatments for a patient requiring intensive care, her intestines healed, her skin torgor and pulmonary status recovered to normal, and she regained spontaneous maintenance of blood pressure without pressor medications.
She still requires blankets to maintain temperature, but for the past 3+ years she has remained remarkably healthy, apart from being severely neurologically disabled.
Disabled isn’t dead. In short, the very medical benefits that California doctors believed could not succeed based on Jahi’s loss of all brain function instead proved physically efficacious.
Shewmon also reviewed forty-nine videos taken by Nailah, most of which appear to show Jahi responding to her mother’s requests to move different parts of her body. He testifies that some of the movements could be caused by spinal cord impulses—but not all. Shewmon notes, “There is a very strong correspondence between the body part requested and the next body part that moves. This cannot reasonably be explained by chance.” Given that tests have shown that these videos have not been doctored, these images should raise all our eyebrows.
I witnessed this when we were visiting. Nailah showed Bobby and me two startling videos that appeared to depict Jahi clearly responding to simple movement requests. While we were standing around Jahi’s bed, Nailah asked Jahi to touch her right index finger and thumb together. Jahi appeared to be trying to comply—it was hard to say for sure—but didn’t succeed. A few minutes later, I saw her slowly move her thumb and forefinger together. I nearly jumped out of my shoes, as she complied precisely with what Nailah had asked of her. It is important to note that Jahi’s digits did not “jerk” or “twitch” during the movement, as one would expect from an involuntary action. Rather, it appeared entirely volitional and controlled. True, it was a few minutes after first being asked. But brain-injured people often react slowly to requests.
Again, I am only recounting what I witnessed and am not claiming to be an expert. But Shewmon certainly is an expert. After reviewing Jahi’s medical condition and history, the tapes, and other data, he testified:
Jahi McMath 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. At the very least, in the matter of life versus death, the compelling evidence [in videos] of responsiveness to commands and of puberty warrants giving life the benefit of the doubt.
For their part, the hospital’s medical experts insisted to the judge that the videos prove nothing—that Jahi’s current physicality remains consistent with brain death and so the original findings should be binding. However, the judge refused to remain mired in 2013. In a potentially precedent-setting decision, he ruled that Nailah may attempt to prove that Jahi is alive in a medical malpractice case.
I support that decision. But I don’t think it is adequate to the portentous moment. If Jahi is not—or, perhaps better, no longer—brain dead, this may be an unprecedented event, as there are no known cases of a properly diagnosed brain-dead patient experiencing restored neurological function. And I am stunned that the medical and bioethics communities generally show such a pronounced lack of curiosity about Jahi’s situation. True, there have been rare cases of the bodies of brain-dead people not deteriorating over time. But surely the other factors described by Shewmon and the videos should pique their interest.
Perhaps it is just a case of “experts” not wanting to know—because if Jahi isn’t dead, it would have epochal legal, social, medical, and scientific ramifications. But so what? Jahi deserves justice. If alive, she is a full and equal member of the moral community.
I hope that several prominent neurologists without a stake in the situation will step forward and volunteer to examine Jahi—and not just for a day or two but over an extended period of time, to test her brain and body functions thoroughly and determine whether she does indeed respond to requests. Then, if she lacks even one criterion for brain death, Jahi’s California death certificate should be revoked—let the chips fall where they may.
Postscript: Every time I write about Jahi’s uncertain situation, commenters angrily accuse Nailah of being “in it” for the money (while somehow never arguing that the hospital could want Jahi to “stay dead” for the money). I don’t believe it. Nailah clearly believes that Jahi is alive. Moreover, she is deeply—nay, fiercely—dedicated to caring for her daughter, a full-time and exhausting task. Those who claim that she is exploiting Jahi to make a profit don’t know what they are talking about.