When the story of Jahi McMath broke a little over a year ago, we found ourselves troubled by how the McMaths were portrayed in national press accounts. Now that the girl’s parents have filed suit against Jahi’s surgeon and the California hospital where the girl was seriously harmed, we worry this same misleading portrayal of the McMaths and Jahi’s surgery will happen again.
Here is that misleading story: Following a random bad outcome from a necessary tonsillectomy, Jahi suffered brain death, and since then her supposedly selfish and unrealistic religious African-American parents have refused to take her off of life support and give up her organs to save other children.
But when we look at the actual details of this case, including as it is laid out in the legal complaint, we don’t primarily see a story of wasted resources following brain death. We see, first and foremost, a story of medical excess leading to brain death—and of a family understandably in complete shock at the way they were subsequently treated.
Each year in America, thousands of children die because of questionable medical interventions and poor follow-up, and families that are harmed continue to have trouble getting the truth and the support they need.
Jahi McMath was 13 years old when she was brought to Children’s Hospital Oakland in December 2013 for a surgery to treat sleep apnea, a problem likely exacerbated by Jahi being overweight. Instead of beginning with less invasive approaches, such as prescribing a CPAP machine to facilitate breathing while asleep, an ear-nose-and-throat surgeon named Frederick Rosen recommended taking out Jahi’s tonsils, her adenoids, the soft palate of her mouth, and other nearby tissues.
This was a very invasive surgery, and Jahi began bleeding from the surgical wounds immediately following the procedure. Over the next five hours, apparently neither Rosen nor any other physician came to check on her, despite her family and nurses reporting continual and substantial bleeding. Jahi finally bled so much that she went into cardiac arrest. This is when doctors finally arrived at the girl’s bedside, according to the lawsuit. Following two and a half hours of attempted resuscitation in which two liters of blood were drawn from Jahi’s lungs, she was ultimately declared brain dead.
The hospital then pushed the family hard for organ donation and disconnection from life support. In the media, supporters of the hospital championed organ donation as a way to make this a story of salvation following a tragic outcome. Resisting disconnecting Jahi, the family came off looking scientifically naïve and selfish. Lost in many accounts was the uncomfortable fact that the hospital and surgeon would have to pay much less if Jahi were legally dead, because the hospital could not be held responsible for years of support for a disabled person.
And what of the procedure itself? Tonsillectomy has traditionally been done for recurrent throat infections, but the efficacy of the procedure for this purpose has been seriously questioned for decades. Today it is increasingly used to treat pediatric sleep apnea. But it is not a well-tested treatment for that purpose, and the much more radical surgery Rosen opted to do in Jahi’s case appears to be an extraordinarily invasive approach.
Even simple tonsillectomy remains far riskier than most people believe. A 2014 review in Pediatrics showed that 7.8 percent of children who undergo tonsillectomy in the United States end up back at the hospital with complications within 30 days.
There are no recent data regarding the mortality rate of simple tonsillectomy, even though it is the second-most common surgical procedure in children, after ear tube insertion. But if the death rate from pediatric tonsillectomy is as generally assumed—about one in 17,000—with a half million pediatric tonsillectomies happening annually, about 30 children will die from this elective procedure in this country each year.
Others will be permanently harmed. In 2011, at the age of eight, Rebecca Jimenez also had a tonsillectomy for sleep apnea, also at Children’s Hospital Oakland. Her mother tried to get the hospital staff to take seriously Rebecca’s downward spiral. Rescue came too late, leaving Rebecca so brain-damaged she can no longer speak or walk.
But it would be a mistake to think this is a problem special to this one hospital. All over the nation, we have encountered stories like this, and in some cases, administrative unwillingness to reform. The fact remains that, each year in America, thousands of children die because of questionable medical interventions and poor follow-up, and families that are harmed continue to have trouble getting the truth and the support they need.
What needs to change?
Patients and their families should have the right to the truth about adverse event rates in specific hospitals for specific procedures, in advance of consenting. And when they are harmed, they should have the right to quickly get the truth about that harm. Families like the McMaths need to be treated with compassion and justice, not branded by hospital public relations offices as abusers of a system of which they are, in fact, the victims.