Jahi McMath, alive in social media

Even as medical horror stories go, this one was disturbing. On Dec. 12, 13-year-old Jahi McMath of Alameda County went into cardiac arrest and was declared brain dead following a reportedly routine tonsillectomy three days earlier. Not long after, the girl’s family were making national headlines with their petition for a court order to stop doctors at Children’s Hospital & Research Center Oakland from turning off the ventilator that was keeping her heart beating. They had also retained an attorney and were sharing their version of events with the press, a privilege they did not extend to the hospital, which under HIPPA laws cannot disclose information about patients without family consent.

The court initially set a Dec. 30 deadline for turning off the ventilator, but on Monday a judge granted an extension to Jan. 7. The family says they believe Jahi is alive and plan to airlift her to a facility in New York.

Short on facts and long on emotion, this case is catnip for the court of public opinion. Though there was an initial wave of sympathy for the family — “they need time for closure� was a typical Internet comment — such sentiments quickly gave way to pity, frustration and even suspicion that they were trying to cash in on the situation. An online fundraising campaign set up by the family has collected more than $30,000 from nearly 1,000 donors. The family says the money will go toward transferring Jahi to a facility that will, in her mother’s words, “accept her in her current condition.�

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That condition, according to multiple doctors inside and outside the hospital, is deceased. Jahi’s body is warm and her chest is moving only because of the ventilator, experts have explained. A transfer to another location would require intubation, which the hospital has deemed inappropriate on a dead body.

But it’s become clear that many people, Jahi’s family included, don’t understand or believe in the difference between brain death, in which all functions of the brain and brain stem have irreversibly stopped, and a coma or vegetative state, in which there is brain activity.

“This girl is only brain dead and they’re gonna kill her!� a tweeter ranted. In an interview, Jahi’s mother expressed hope that one day her daughter would open her Christmas gifts. In the meantime, she said, the girl needed nutrition to heal.

As the legal battle rages on and social media buzz with alternating currents of compassion and exasperation, something else is also clear. Public outrage about the case has gone far beyond medical misconceptions and is feeding into tensions around race, class and conflicting belief systems.

“If #JahiMcMath came from wealth they would have that machine turned on forever,� went another tweet. On the fundraising site, contributors promise to pray for miracles. On comment boards, some have insinuated that doctors just want to harvest Jahi’s organs or see her as disposable because she is African American. (For the record, Children’s Hospital Oakland has a first-rate reputation and serves a large black population.)

But finger pointing is by no means limited to the pro-ventilator crowd. Some who disagree with the family’s position have suggested that what’s in play now is not just extreme denial but blatant opportunism. Many seem determined to point out that Jahi, an obese child, did not undergo a “routine� tonsillectomy, but, as doctors have explained, a more complex series of procedures.

All of us following this case, whether we applaud this family or are appalled by them, are searching for some kind of solace. We’re all looking for someone to blame. We’re looking for assurance that this terrifying story is being told by an unreliable narrator, hospital or lawyer or family. We’re telling ourselves that dying from tonsil surgery happens only to children who eat too much or whose doctors are too willing to pull the plug or whose families don’t believe in miracles.

In doing so, we’re exhibiting some of the same kind of denial that this family is caught up in. We’re trying to rationalize death. We’re operating under the assumption that there’s an answer that can undo what has happened, or prevent it from ever happening again, if only we look hard enough. But if that were true it would be a miracle. And as Jahi’s family will learn soon enough, you can’t force those by artificial means.

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Twitter: @meghan_daum