The family of the 13-year-old brain-dead girl in Oakland, California is about to squander a unique opportunity to have profound good come from this tragedy, just so it may purchase a little both temporary and false hope.
Analysis and opinion
by GREGG DesELMS
Posted late on New Year's Eve 2013
Yesterday (Monday, 30 December 2013), at 4:15 PM PST, I posted, on Facebook, that in 45 minutes (from that moment), Children's Hospital Oakland would be legally allowed to disconnect 13-year-old Jahi McMath from life support machines and allow her body to die along with her brain that died back on December 12th; and I further wrote that though her family has been misguided in its quest to keep her on the machine, at all costs, we should all nevertheless pray for them as they navigate this most painful experience of their lives.
SEE | http://on.fb.me/1cVWL5h
I didn't know, at that writing, that about an hour earlier the girl's family's attorney had convinced the judge to allow the child to stay on the machine for another week; and the Court stayed its earlier order which allowed the hospital to disconnect her at 5:00 PM PST yesterday. The hospital is now allowed to do it at 5:00 PM PST on Tuesday, January 7, 2014. In my defense, the mainstream media didn't begin reporting that until 15 minutes after my posting, and so I didn't know about it at the time. At around 7:50 PM PST yesterday, though, I updated my posting, in a comment beneath it.
Now I'm writing this.
It should be mentioned that Children's Hospital Oakland is world class... the kind of hospital to which parents desperate for best-of-breed medical care for their children travel from great distances, almost like the Danny-Thomas-founded St. Jude Children's Research Hospital in Memphis, or any of a number of Shriner's hospitals for children, among others.
SEE | http://bit.ly/1cl573M
It's unclear exactly what happened between the child's entering the hospital on December 9th, and the hospital's official declaration that she was brain dead on December 12th. Her famiily has never authorized the hospital to publicly speak about her case, and California law actually provides for jail time for those who run hospitals and violate the state's patient privacy laws. The Federal Health Insurance Portability and Accountability Act (HIPAA) also keeps the hospital from providing many details; and so it has never been able to explain anything about what happened; and no one in the family has or likely will provide many details -- or even assign blame, yet, really -- until, understandably, the child has either been removed from the machine and her body allowed to join her brain in death; or said family has successfully gotten the child's body out of the hospital and into some kind of long-term care facility. Whether or not there was any malpractice, only the hopital knows; but no one's talking about that yet. The only thing the hospital is legally allowed to say about it is what has been disclosed in, or is directly related to and does not go effectively beyond the scope of, public court records.
Some news reports have oversimplified the surgery by calling it a "routine tonsillectomy." The child's mother, Nailah Winkfield, is largely responsible for that, having used a similar phrase during an interview with a reporter in the hospital waiting room.
However, calling it a mere "routine tonsillectomy" is almost outrageously misleading... so profoundly so, that it's difficult for me to sufficiently suspend cynicism that I can avoid suspecting it to have been an intentional manipulation to both get sympathy and garner public support. The family has, after all, been raising funds on the GoFundMe website...
SEE | http://bit.ly/1kZYYyB
...which, as of this writing, total over $40,000 from well over 1,000 donors (when only $20,000 was originally sought). The money, says the family, is to pay for moving the child's body (and, yes, I use that phrase because that's all it is, at this point, because she's brain dead) to a long-term care facility. My cynicism also permits me to take Winkfield's motivation for her informational manipulation one possible step further by allowing for that she's also thinking in terms of a malpractice suit at some point in the future. Both endeavors benefit from the public (from which a jury will likely ultimately be selected) believing that it was a mere "routine tonsillectomy." Shame on the media for not digging deeper.
Contrary to Winkfield's quite-probably-intentional informational manipulation, the hospital said in Court (and so included it in its press releases and statements on its website) that the surgery was "complex;" and Winkfield, herself, inadvertently provided confirmation that that must be so when she disclosed in her waiting room interview that the surgery was to treat her child's sleep apnea. No sleep apnea surgery is "routine;" in fact, few of them even involve tonsillectomies, as this child's surgery complicatingly did.
Sleep apnea is a condition in which a person stops breathing during sleep for short (and sometimes not-so-short) periods of time, usually repeatedly, usually all night long (or at least most of it). This, of course, deprives the brain, heart and other organs of quite as much oxygen as they require; though in mild to moderate cases, only insignificant damage -- if any -- occurs, over time, to organs, including and especially the heart. In more severe cases, though, the heart (and other organs, too) can be damaged, indeed, over time; and after many years of it in even only moderate cases, cardiac arrest can eventually occur. Most of the time, though, the symptoms are as simple as severe snoring, accompanied by the kinds of things during waking hours that repeated and chronic sleep disturbances and sleep deprivation can cause: tiredness/sleepiness, lack of attentiveness and drive, moodiness and even belligerance, forgetfulness, etc.
There are basically two kinds of sleep apnea: One has to do with the brain not sending the right signals to keep normal breathing going during sleep, and the other has to do with physical blockage of one or more parts of the airway... usually in the throat, but sometimes in the sinus cavities, too. Yet a third kind of sleep apnea results from a combination of the two. Less than one-half-percent of all sleep apnea cases are the kind where the brain isn't sending the right signals; and not even 15% of the cases are the combination kind: leaving some roughly 85% of all sleep apnea being the obstructed airway kind.
Obesity is a huge factor in obstructive sleep apnea; and this child was obese. Yes, you read that right: I'm using "was," because, again, the child is no more; she is deceased, and all her family's wishing otherwise, and all its artificially keeping only her body and organs (excepting her brain, of course) alive with a ventilator won't change that. I'm sorry if anyone reading this is disturbed by such directness. I tend to go there in situations like this.
The first line of defense with not-so-severe sleep apnea can be as simple as sleeping with the upper body slightly elevated... to around, say, 30%, give or take. Beyond that, some slightly more aggressive treatment for moderate sleep apnea adds to upper body elevation some kind of oral appliance that's custom made to fit into the mouth in such a way that it helps to hold the throat open during sleep; and more severe cases -- including, actually quite severe ones, sometimes -- are better responded to by said upper body inclination coupled with the use of what's called a "Continuous Positive Airway Pressure" (CPAP) machine, which involves the use of a special strap-on breathing mask. Sometimes, even with severe cases, combining the three methods is employed, though CPAP, alone, along with upper body elevation, is usually sufficient.
Only quite -- as in VERY -- severe cases of sleep apnea require surgery; and so let's just not pussyfoot around this, shall we: this child's sleep apnea was obviously quite severe. So, by definition, nothing about this surgery was "routine." I'm sorry, but shame on Winkfield for characterizing it that way for the press.
Stretching and tightening of the lining and muscles of the airway -- as well as sometimes even work in the sinuses -- is typically required in sleep apnea surgery; and that's no small feat. Adding the removal of the tonsils to that task is complicating, to say the least. Add to that that surgery is always a last resort treatment for sleep apnea, and it becomes apparent that the hospital's calling it "complex" was likely anywhere from wholly accurate to even a gross understatement.
And the child, it seems, knew. History is rife with examples of people having premonitory feelings about whether they'll survive something dangerous in which they're about to engage, or that's about to happen to them; and according to Winkfield in that waiting room interview, her daugher expressed significant fears about -- and even predictions of -- not surviving the surgery during the days leading-up to it. Her family was relieved, then, when the child awakened seemingly normally from the surgery, and even sat up a little, and even ate a little bit of a Popsicle.
But then she started to bleed from her mouth and nose... to the point that the front of her gown was soaked in blood, and the pink plastic cup in her hand was nearly filled with blood. Several such blood-filled cups, Winkfield later said, were eventually in the room... yet no one was telling the child that it was blood whenever she asked someone to wipe her runny nose. To counteract the blood loss, the nurses even began hanging bags of blood alongside the saline and other drips.
"Is this normal?" Winkfield repeatedly asked nurses. Said nurses tried to comfort her as the bleeding continued for hours...
...until, it is my suspicion, the child's already-sleep-apnea-damaged heart stopped from the continuously-lowering blood pressure -- from her, in effect, bleeding-out... her near or actual exsanguination -- and possibly even a concomitant airway obstruction, along the way, from the pooling blood. Then, however long it took to revive her was enough to cause brain death. That's my theory; and you read it here, first. Time will tell how close I came.
UPDATE Wed 1 Jan 2014: While looking for additional reading for listing beneath this story, I just discovered that yesterday (12/31/2013), on ABOUT.COM's Sleep Disorders website, Brandon Peters, MD, wrote about this case:
Jahi underwent three surgical procedures for the treatment of her sleep apnea. This included a tonsillectomy, uvulopalatopharyngoplasty (UPPP), and removal of nasal turbinates. Though initially described as a "routine tonsillectomy," this degree of surgery in children is not routine. It is extensive. When performed on a child, the risk is high.
He then added his suspicions about what may have happened:
In recovery from surgery, about 30 minutes after its conclusion, it seems that she began to bleed profusely before she went into cardiac arrest. What may have triggered this? It has not been publicly disclosed, and it may not be fully known until autopsy. It is possible that she may have choked on her own blood and that this may have led to asphyxiation, depriving her brain of oxygen. Another equally plausible explanation would be that she lost such a volume of blood that her blood pressure dipped and, in a state of decreased blood flow to the brain, it was irreparably injured. Either scenario may be associated with a heart attack, as has been described. Regardless, the insult was fatal.
Two hospital physicians, plus three outside physicians at the request of the family, and one Court-appointed physician all examined her; and all five of them found her to be suffering from "whole brain death," wherein no blood at all is circulating in the braiin, and there is absolutely no electrical activity, not even in the brain stem. The brain stem is the part at the top of the spine: the so-called "primitive" brain, where involuntary things like breathing are controlled. Once the brain stem's dead, it matters not if any other part of the brain still survives; but in this child's case, none of it has. She is completely -- with emphasis on "completely" -- brain dead.
As with all such cases, there is occasional muscle spasm or even movement, which has nothing to do with brain activity; and that is misleading some in the child's family into believing that she's alive and/or even reactive to noise and/or touch. Such is quite common with brain death patients whose bodies are being kept artificially alive.
"We won't stop," said Winkfield on Monday evening, after both a state appellate court ordered that the child must be kept on life support through 5:00 PM while the lower court issued its ruling; and then said lower court ordered, at around 4:00 PM PST, the extension until January 7th. "I believe my daughter is alive, continued Winkfield. "I don't care what they say; she's moving. If you go in a room with your child and talk to your child and they respond to you, you're going to believe your child is alive. I'm not trying to hold onto a corpse -- that is a live girl in there."
"Jahi is moving when her mother speaks," said the child's uncle, Omari Sealey, on Monday afternoon. "We have video," he continued. "Our attorneys have just produced it to the hospital's attorney. We have a pediatrician who has seen Jahi who has sworn that she is not dead." Sealy added that the family may release the video to the public later in the week.
The child's grandmother, Sandra Chatman, also told reporters on Monday afternoon that the child is responding to sounds and touch. "I know we're going to have victory today," said Chatman. "She's moving her body. Her vital signs are good. ... I believe that Jahi can recover." Chatman drove home the point by showing that she's carrying the child's pearl earrings in her purse... the ones the child removed and gave to her for safekeeping just before surgery. Chatman said they would never leave her possession until the child awakens.
Winkfield said she would never stop praying for her daughter. "If I didn't fight for her, they'd say 'That mother is no good, she didn't fight,' and now I'm fighting for her, and now they say 'She's doing too much.' So the only thing I can do is what I know how to do and what my mother taught me how to do, and that's to fight for your children," she said, adding, "because my daughter can't fight for herself right now, I'm her voice. My brother's her voice. Everybody who's praying for her... all of those people are her voice."
The hospital will not allow the child's body to leave it (other than if it's completely dead, and removed by a funeral home) until and unless its conditions are met, to wit: that the facility to which it is taken is qualified (licensed, equipped, experienced, etc.); that an outside physician comes into Children's Hospital and performs the surgery needed to insert permanent breathing and feeding tubes into the body (since the hospital refuses to do it because, after all, it's a corpse, and one doesn't operate on corpses); that there's a medically both normative and sound way of transporting the body to the facility; and that said facility is willing to accept "a deceased person," as hospital spokesman Sam Singer worded it.
UPDATE Wed 1 Jan 2014: On last night's local 11 o'clock television news broadcasts, it was reported that the hospital is now saying (or perhaps has always said, and so this is really just a clarification) that the surgery may not be performed in the hospital, after all; and that if the child is to be removed to another facility, it would have to be ventilator-and-all. And so, then, the both airway (tracheostomy) surgery, and the feeding tube surgery, would have to be done elswhere... presumably in a hospital in the ultimate destination city, if not in one in Oakland before loading the body onto an airplane and taking it wherever it's going to end-up. The family's attorney called this just another of many roadblocks that the hospital seems to be erecting at every turn.
The Court is allowing the hospital to uphold those requirements, and so if they're not met by the 7th, the Court is allowing the hospital to finally end the situation by turning-off life support at 5:00 PM PST. Speaking to reporters late Monday afternoon, Singer added that while the hospital would comply with the court orders, its attorneys would nevertheless file motions opposing the family's attempts to move the body to another facility "so this tragedy may have a conclusion."
"This is one of the most tragic situations imaginable," Singer said. "No amount of prayer, no amount of hope and no amount of any medical procedure will bring her back."
Chris Dolan, who represents the child's family, said in court papers that the "New Beginnings Center" in Medford, N.Y., has agreed to take the child's body. In a letter to the Court, the center described itself as a "long term subacute care inpatient center caring for the severely brain injured patients"; and added that it was aware of the child's "dire situation" and was willing to accept her as a patient. Unfortunately, though, the part of the center where the child's body would be housed and kept on life support, called "Brendan House," is only, to use the center's words, "near completion." And so while the family has found a place to take the child's body, and keep it indefinitely artificially "alive," said place is not quite yet ready to receive it. Nor is there an estimate of when it will be able to.
Two other similar centers in California, for sure -- and possibly a third, also in New York -- had earlier indicated an interest in taking the child's body, but all backed-out before this past weekend.
A company called "Medway Air Ambulance Service," in Lawrenceville, Georgia, submitted a bid of around $28,000 to transport the child's body from Oakland to New York; and the over $40,000 collected from the GoFundMe website donations will obviously cover that amount, with some left over for other expenses and perhaps, also, to pay for some of the New Beginnings Center's care.
The trick, then, is to find the outside physician who's willing to go against pretty much every known medical ethic and perform, on a decidedly and unquestionably dead body, two surgical procedures normally reserved for the decidedly living. I'm thinking that that will end-up being the requirement that the family simply won't be able to meet by January 7th... or by any date thereafter, either, if such an option were offered. I would think that most physicians would be concerned about both how his/her state's medical licensing board would view his/her performing surgery on a corpse; as well as how it could affect his/her medical malpractice insurance.
The tragedy within this tragedy, though, is the opportunity the family is missing: an opportunity to actually make something good and lasting come out of all this. In its religious fervor and zeal, the family is not taking the necessary giant step back from it all to first ask itself what the child would likely want, were she, as the lawyers say, "fully advised in the premises;" and, second, ask itself what the child's answer would be if she knew precisely what kind of good I'm talking about, here. By not being willing to recognize and come to grips with the realities, here, the family is depriving the world of something great that could have happened... something I'll bet the child would prefer, if she could really and truly dispassionately assess things.
The child's family has raised over $40,000 (at this writing; likely more to come); and has the world's attention. No matter what this family does, it is going to end-up taking the child off life support, sooner or later, and allowing her body to join its brain in death. If the family does what it plans, and blows the bulk of that $40,000 on transporting the body across the country, and then spends the rest on probably not even a month or two's worth of keeping the body artificially alive in the New York facility (and after the family factors-in its own expenses to make the trip, even enough money for that will likely not be left), then no good other than unnecessarily and flat-out wrongly prolonging a horrible and irreversible situation will have occurred.
Instead, the family should contact all one-thousand-something donors and get their written permission to use the money to seed a memorial foundation named for the child, and tasked with both investing it and getting additional donations, then using the money, over time, to fund worthwhile causes, including, perhaps, even helping families like the child's to deal with situations like this in the future. Then, the family should ask the hospital to help it harvest the child's organs for transplant, before taking her off the ventilator, and making them available to the national transplant system so that a dozen or so people out in the world may be helped...
...all in the name of Jahi McMath, who left the world too early and while still too young; but in whose memory and name so much good would have been done! What better way for both the family to remember her, and her name and memory to be shared with the world for generations!
That opportunity exists right now, but will die with the child's brain, and someday her body, the instant that Medway Air Ambulance goes wheel's up, bound for New York. Completing and filiing the paperwork to form the foundation and get both California corporate, and federal IRS not-for-profit standing could happen in a single day (and both the state and the IRS, under the circumstances, might even be willing to grant standing the very next); and a good and experienced foundation manager could turn that $40,000 into $40 million in relatively no time!
But this family, in the name of both vain hope and blind faith based on nothing, is, instead of turning all this into something amazing, about to squander that opportunity. Tragically. Forever. For nothing.
They should still be prayed for, though; for God's will to prevail, regardless. On that, I have not wavered.
Gregg L. DesElms
Napa, California USA
gregg at greggdeselms dot com
Dr. Brandon Peters, MD, on ABOUT.COM's Sleep Disorders website ("Must" reading!)