The Gifts of Jahi

JahiNew Year’s Day should be a time of fresh beginnings and forward motion. But for the family of 13-year-old Jahi McMath, the holiday season has been suspended in a cloud of unfathomable pain and suffering: A routine tonsillectomy gone wrong. A beautiful child declared “brain dead.” Lawyers, TV cameras, tears.

The McMaths are fighting for life. On Monday, they won a court order that prevents Children’s Hospital of Oakland from pulling the plug on Jahi until Jan. 7. Her relatives have been attacked as “publicity hounds” for doing everything possible to raise awareness about the young girl’s tragic case. They’ve been criticized as troublemakers for challenging powerful hospital officials. They’ve been labeled “selfish” and ignorant because they are praying for a miracle.

Why, many observers ask, don’t they just “accept reality” and let go?

As the mother of a 13-year-old girl, I would have done everything Jahi’s mom has done to this point. Everything. Here’s reality: Children’s Hospital faces serious malpractice questions about its care of Jahi. Hospital execs have a glaring conflict of interest in wielding power over her life support. According to relatives, medical officials callously referred to Jahi as “dead, dead, dead” and dismissed the child as a “body.”

The McMath family refused to be rushed or pushed around. They demanded respect for their loved one. I say more power to them.

There are plenty of reasons to question the medical establishment’s handling of catastrophic cases involving brain injury and “brain death.” In 2008, doctors were dead certain that 21-year-old Zack Dunlop was legally deceased after a horrible ATV accident. Tests showed there was no blood flow to his brain. His hospital issued a death notice. Authorities prepared to harvest his organs. But family members were not convinced. A cousin who happened to be a nurse tested Zack’s reflexes on his own one last time as the hospital swooped in. The “brain dead” “body” responded. Forty-eight days later, the supposedly impossible happened: “Brain dead” Zack Dunlop walked out of the hospital and lived to tell about his miraculous recovery on the Today Show.

The immense pressure Jahi’s family faces to give up and give in reminded me of another child written off by medical and government officials: Haleigh Poutre.

She’s the miracle child who was nearly beaten to death by her barbaric stepfather. Hooked to a ventilator in a comatose state, she was then nearly condemned to death by Massachusetts medical experts and the state’s criminally negligent child welfare bureaucracy, which hastily declared her to be in a hopeless vegetative state and wanted to pull the plug on her life.

The “experts” were wrong. Haleigh breathed on her own; a caring team of therapists nursed her back to health. Soon, she was brushing her hair and feeding herself. She lived to testify against her abusive stepfather, now behind bars. Her survival is a stark warning against blind, yielding trust in Big Nanny and Big Medicine.

We don’t know what God has planned for Jahi. But I do know this: America has become a throwaway culture where everything and everyone — from utensils to diapers to cameras to babies — is disposable. Elites sneer at the sanctity of life. The Terri Schiavo case brought out the worst, most dehumanizing impulses of American medical ethics debates. And from the attacks I’ve seen on the McMath family, little has changed.

Schiavo’s brother, Bobby, knows exactly how it feels to battle the culture of death and medical expediency. His group, Terri’s Network, and other pro-life organizations are trying to help with Jahi’s transfer to a long-term care facility. In the meantime, Jahi’s plight serves as a teachable moment for those with ears, eyes and hearts open. This is a gift. “Families and individuals must make themselves aware of what so-called ‘brain death’ is and what it is not,” Schindler advises. “Additionally, families and individuals must educate themselves regarding their rights as patients, the advance documentation that must be completed prior to any medical procedure as well as how to ensure best any patient’s rights.”

Jahi’s story should also prompt family discussions about living wills, durable powers of attorney, “do not resuscitate” orders, revocable trusts and advance directives. It’s never too early to broach these uncomfortable matters of life and death.

I want to thank Naila Winkfield and the McMath family for not “letting go” so easily. Their plight is every parent’s worst nightmare. Their fight reaches beyond ideology, race, and class. The united front of the family and the public testaments of their faith in God are gifts. The Instagram image of Naila clasping her daughter’s hand at her hospital bedside — the hope, the desperation, the abiding love — is universal. At the start of 2014, the greatest gift of Jahi is her transcendent reminder that all life is precious. Let it not be taken for granted.

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  • American1969

    This story is very sad and I feel for her family. A tonsillectomy is a pretty standard procedure—-obviously the hospital screwed up and now they’re trying to cover it up and make it go away.
    On the other hand, if there are no brain waves, then that means she isn’t alive. We’re not talking coma here, we’re talking absolutely no brainwaves, no activity. That means dead.
    I feel really bad for her family. I can’t even begin to imagine the suffering they’re going through. But if that hospital was negligent with their child (and it sounds like they were), then the family should be talking to the media! The public has a right to know if the hospital screwed up or not.

    • Otis

      It wasn’t just a simple tonsillectomy, it was a 3-part complicated procedure which often has bleeding complications. And, the patient had serious risk factors including severe obesity. Surgery and anesthesia always carries a risk of complications. It’s a bad deal, one of the problems with complex surgeries on a risky patient. It happens, and isn’t good.

      • Maggie

        sure it was risky, if the doctor didn’t think he could do it safely, he shouldn’t have done it

      • unionville

        I agree with everything that you have stated about the medical reality. But this hospital has not handled this at all well. I’ve been a hospital registrar in the past working every department from ER to Outpatient and, unfortunately, I’ve had to be around patients and families who have to deal with tragedies such as this. Consequently, I’ve also seen how medical personnel and administrators deal with families during this type of crisis. This hospital’s reaction is not passing the smell test. I don’t blame people for jumping to conclusions concerning whether negligence was involved.

      • defcon 4

        “serious risk factors” and “severe obesity”. I’m sure these are complications that weren’t identified until after the patient nearly died right?

  • Maggie

    Thank you, Michelle, so very well put, you have verbalized everything i have been thinking and feeling.. Thank you

  • defcon 4

    I wonder if the ghouls at the hospital were already rubbing their hands in glee at the prospect of harvesting Jahi’s organs? Poor girl, I hope her family gets big bucks for suing these incompetent buffoons for killing a healthy young girl while performing routine surgery. I’d love to know the exact names of the surgeons and anesthesiologists involved as well.

    • BS77

      You don’t know the nature of the surgery, nor the ability of the surgeons involved. From what Ive read, the little girl had severe obstructive apnea…and part of the surgery was of the palate…not just a simple tonsillectomy. The tragic result is that she will very likely pass away as soon as she is taken off life support. It happens. I do not necessarily blame the surgeon or the hospital. You simply do not know what happened. Surgeries always come with some risks….some people’ s lives are saved…some are lost….despite the best efforts of the doctors. You do not know the nature of this girl’s pre existing condition, her anatomy or what happened during surgery or afterwards. I personally feel like her parents are trying to do the impossible, but that is their right.

      • defcon 4

        Surgeons bury their mistakes — and lie about it while doing it.

        • BS77

          Don’t be so cynical. A surgeon might save your life one day. A surgeon saved mine. A small per centage of surgeries end in death, true…and there are many factors….the huge majority of surgeries are successful.

          • defcon 4

            Yeah, I trust the medical community in the USA — about as much as I trust the political establishment of the USA.

  • 11bravo

    As a 50+ year old, who has pulled the plug on two of my siblings (at age 46 and 50), and I have the same disease. I wish the media, and Michelle would stop with the sensationalizing.
    It is a tremendously personal decision, but I am afraid if the family didn’t go to the media this girl would be in the ground already. We knew we had to pull the plug. One brother was a fairly easy decision. My sister was not so clear cut, so she was kept alive 6 months before we let her go.
    I just hope this gets an outcome that minimizes the family’s grief.
    I took the decisions away from my loved ones with a DNR, and a no feeding tube order. If I can not consciously receive the love of my grand children, or give it – I do not want to be here.

  • KyPerson

    My prayers for the family. I had the medical POA for my mother and agonized over whether I would have to make a life or death decision. She died before I had to. It’s never easy.

  • Phương Trinh

    They’ve been criticized as troublemakers for challenging powerful hospital officials.

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