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Brain dead 13-year-old tonsil surgery patient to remain on life support

6:35 am by | 41 Comments

MRI-brain-344x239

The family of a 13-year-old Oakland girl who was declared brain-dead after tonsil-removal surgery served a cease-and-desist order to Children's Hospital Oakland on Tuesday demanding that she be kept on life support, then said hours later that the hospital had agreed not to remove the ventilator.

However, the next steps remained unclear, and privacy laws left the hospital unable to comment on the case or "correct misperceptions created about this sad situation," the chief of pediatrics said in a written statement.

The move by relatives of Jahi McMath brought a potential legal element into an unusual -- though not unprecedented -- case that has captured widespread attention.

Tonsillectomies are one of the country's most common surgeries. More than 700,000 are performed each year, according to a recent study, and estimates of mortality in the U.S. and England range from 1 death in every 10,000 cases to 1 death in every 29,000 cases.

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Jahi's family said she had a tonsillectomy at the hospital on Dec. 9 to correct her sleep apnea. She appeared to be fine after emerging from the operation, relatives said, but later blood began pouring out of her nose and mouth and she went into cardiac arrest. She was declared brain-dead Thursday.

Family members have been hoping for a recovery, though, and have accused doctors of pressuring them to remove Jahi from machines that are helping her breathe. The girl's uncle, Omari Sealey, hand-delivered a cease-and-desist letter to doctors on Tuesday written by San Francisco attorney Christopher Dolan.

The letter cited the California Patient Bill of Rights and asked top hospital officials to "refrain from any actions or activities which would remove Jahi from life support" until there is a "judicial determination" in the matter.

"If they move without our consent after having this letter in their hands," Sealey said, "they're just creating more problems for themselves."

Prayer vigil

On Tuesday afternoon, Dolan, surrounded by family members, said the hospital had agreed to keep Jahi on life support indefinitely, even as a second test Tuesday confirmed the girl had no brain activity. "There is no timeline currently," he said. "That gives the family time to hold a prayer vigil (Wednesday night) and seek to have some kind of divine intervention."

Dolan said Jahi's mother, Nailah Winkfield, had a "full and frank discussion" with doctors on Tuesday about her daughter's prognosis.

"The mother understands the progression that could take place," Dolan said. "The mother's aware of how conditions could deteriorate or stay the same. She is just of the mind that this is not something that should be rushed, and that it's something that she wants to talk to God (about)."

In a statement, David Durand, the hospital's chief of pediatrics, said, "Our hearts go out to this patient and her family. Unfortunately, we have not been authorized by the family to share information with the public about this matter. Consequently, we are not able to correct misperceptions created about this sad situation.

"Nonetheless, we want to assure the community that we are doing everything in our capacity to provide support to the grieving family."

Cover-up feared

Winkfield told reporters outside the hospital earlier Tuesday that she feared the hospital would "cover up" what happened to her daughter. She was angry, saying, "Thank you, Children's Hospital, for just ruining my child's life and my life."

Winkfield said she believes Jahi is trying to communicate with her, saying, "I feel her. I can feel my daughter. I just kind of feel like maybe she's trapped inside her own body. She wants to scream out and tell me something."

She said, "I want her on as long as possible, because I really believe that God will wake her up."

Difficult decisions

The case highlights the nuances and difficulties that surround end-of-life decisions. No two cases are the same, and even the term "brain-dead" can mean different things in different contexts, experts said.

Culture, religion, family dynamics and many other factors can affect how people handle such issues, said Kathleen Day-Seiter, a Berkeley elder attorney and former social worker.

"In some cultures, you don't give up, no matter what. You don't give up until the person is gone, gone," she said. "Plus, you're dealing with the emotions of losing a loved one. It can be very complicated."

Henry K. Lee and Carolyn Jones are San Francisco Chronicle staff writers. E-mail: [email protected], [email protected] ___

Copyright 2014 MedCity News. All rights reserved. This material may not be published, broadcast, rewritten or redistributed.

By Henry Lee and Carolyn Jones

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39 comments
RN1991
RN1991

I've followed this case with much hope for the family and concern for the child. As of this article, it clearly states that " on Tuesday demanding that she be kept on life support, then said hours later that the hospital had agreed not to remove the ventilator". So she is on a vent via the tracheostomy which is necessary to prevent ulceration of her bronchial tube if the breathing tube were still in her mouth. That method should never go longer than a week or so.

Cost effectiveness should never be used as a way to argue futility. Though in this case and with what we are allowed to know, criteria has been met repeatedly and at different intervals, to determine brain death in this case. It will either come down to the court determining that this child has no hope to improve and allow the doctors to remove her humanly or the family will have to make a determination about this child's quality of life which they don't seem ready to do. There are those out there encouraging the family to preserver based on personal experiences that may have been similar in her unconscious state but,  brain death will not reverse itself.  In any case, there are no winners here.  


msmiceyland39
msmiceyland39

Im so sorry for the mom, but this kid is dead being kept alive on machines is gone ,brain dead ...

sturmphan
sturmphan

Old story.  If the family wants to pay for the care, then keep her on life support.

guestb
guestb

This story was months ago at the least. It was all over the media at that time.

JanGoldsworthy
JanGoldsworthy

There is not price that can be put on a person's life.  That being said, it has already been determined there is no brain activity, she cannot be sustained on her own, the machines and feeding tubes are keeping her "alive".  It has been a number of months since this incident, and there has been no improvement at all.  I feel for the parents, but it is also very unkind to allow them to continue to hope when it is futile.  No one wants to lose a child but this child is already gone.  To spend more money to remove her body to a nursing home is not even reasonable.  If they chose to do this, they should be responsible for the costs that will be incurred.  Not the taxpayers.  An awful lot of money has been spent already because the family didn't want to believe the doctors that she was already gone.  After all efforts are exhausted, the family should either take responsibility for the bills or let her go.  The money that is sustaining her "body" is funds that could be used to help those children who need medical care and funds to provide it.  I sincerely hope this family can find some peace and make the right decision.  God Bless them.

Robert Smith1955
Robert Smith1955

The family got a court order to take the BODY and put it in a nursing home.  After this was accomplished, what does the hospital have to do with it anymore?

snookie
snookie

Are they going to leave her on the ventilator until she starts to decay?

Cgfeebeee
Cgfeebeee

It's very important to realize thath this patient is dead, any intervention is futile, and we are paying the bill as society at this point. I'll bet the family would change its tune if they were paying. It's also important to know that these issues have already been hashed out from an ethical standpoint years ago and it is widely agreed buy ethicists and those in medicine that care should be withdrawn.

Ken345
Ken345

I will try sending her some Reiki Healing Energy and perhaps it can help.


tommy tornado
tommy tornado

surgery always has risks ,and depending upon the surgeon and the case in question risks can be high.

tms3401
tms3401

Sad, sad.  Accepting death is so hard, and seeing the person apparently breathing, etc. gives probably false hope.  I think prayers should be directed to asking for this family to accept the outcome no matter which way it goes. 

asdf
asdf

What a horrible story. My heart goes out to the parents. This is heart breaking. May they find strength to move on with their lives. So sad.

Hoping
Hoping

I serve a great and mighty God that heals, He can do miracles. Your family is in my prayers. Hang in there keep your head up and keep your faith. God is Good. God is in control of the time and intensity of our trails. 1-Peter 5:& says Cast all your anxieties on him because he cares for you. Do just that. God bless you and your family. 

Gavi
Gavi

We, as Americans, feel it is our right to comment and give our opinion on everything we see and hear. I suppose I can lump myself into the same category since I am now commenting. But this is the first time I have ever posted a comment on anything. I understand that articles on the web now give us all a chance to comment. But when faced with a decision of this magnitude, it doesn't matter what anyone else thinks. What is important is what this family is going through. How dare anyone say they understand what this family is going through because you have gone through something similar. You might say you can relate for going through a similar situation but we ALL handle things (good & bad) differently. America and society as a whole have become so cold and uncaring that we feel we can ask "who is paying?" or say "the mother is selfish" without another thought or as if we think others really care about what we (as strangers, by the way) think, especially if it is negative. What our comments should do, if by chance, the family of this young girl or another family going through a crisis, were to read our comments, is provide encouragement. No matter whether you agree or disagree with their decisions, negativity only breeds negativity, making the hurt, anger, or pain so much worse. But providing this mother with positive encouragement will foster positivity. And who knows... It may help give her some peace and aid her in getting to the place where she is finally able to make the most difficult decision any of us could ever have to make. It takes much less effort for us 'to just be nice' rather than judgmental or scathing.

MISS AMERICA
MISS AMERICA

God is in control.  I feel it is selfish on the mothers part.  Let go and let God have his will.

Why Delay The Inevitable
Why Delay The Inevitable

Good question "Just Wondering."  This family needs to let this young girl die with dignity. Brain dead is NOT the same as a coma where the body is healing itself. I'm a mother of two grown children and a grandmother and you have to know when to let go.

Patty195946
Patty195946

Same surgery I died on the table 2 days later where I started bleeding out they almost did not save me they need to do something with theses doctor my heart goes out to this mother and her daughter

Bdslleepy
Bdslleepy

Its hard to let go, but you have to let go some day.  Its the right thing to do.  And YES, I have buried a 7 yr old daughter and hated every moment of it.  But  now she is in heaven and watching over the rest of our family until we meet again.  So move on and start the grieving process, nothings going to bring this little girl back to life. 

funnybuns25
funnybuns25

I don't blame her, I have the same feelings as the mother.  You never know maybe a miracle might happen.. If she wants to keep the daughter on life support, the hospital owes that to her.  Let the mom call the shots it's her daughter, brain activity or not. 

ncdave4life
ncdave4life

"Allegedly brain dead" would be the neutral headline. So-called "brain death" is an inexact assessment. Some supposedly brain dead patients make good recoveries.

ncdave4life
ncdave4life

@CgfeebeeeJahi McMath had not died at the time of this article, and still has not died 6 months later.  A person cannot breathe if her "whole brain" is dead, and Jahi is still breathing.

She is, however, profoundly disabled.

You're worried about the cost of Jahi's care, which I think is awfully coldhearted. But, even so, you may set your mind at ease. She's being fed through a tube, and she's had a tracheotomy, but, other than that, AFAIK, no extraordinary measures are being used to care for her. She's breathing on her own, and tube feeding is not very expensive.


TacticalTaco
TacticalTaco

@tms3401  In normal circumstances I would say there is false hope. If this patient cannot breathe without a respirator then she is definitely brain dead and I haven't read about anything experimental that can revive someone who is that version of brain dead. The other kind of brain dead, where everything except the part that controls breathing and heart rate which usually brings false hopes, does have potential experimental treatments that have worked. There isn't a very large sample so I wouldn't say this with 100% confirmation but I hope that one day there will be more hope:

http://archive.wired.com/wired/archive/14.09/brainshock.html

Cgfeebeee
Cgfeebeee

Ok but God doesn't need a respirator. The fact is the patient is dead and it's costing a ton to keep the blood circulating and we are the ones paying

TC4Sanity
TC4Sanity

@MISS AMERICA - Every good mother is selfish. We all want our children to be safe from harm, to grow up strong, happy, healthy, and loved. Now shut up and let her be.

JanGoldsworthy
JanGoldsworthy

@Patty195946 What would you like to do with these doctors?  I had a bleeding issue when I had my tonsils out.  Every time they put in a stitch, the stitch hole bled profusely.  I just happen to be one of those people whose capillaries and veins are close to the surface in my throat. It isn't always the doctor's fault. Sometimes it's the way our bodies are constructed (for lack of a better term).  Unless you know all the medical issues, it's unfair to blame the doctors for doing something wrong. 

JanGoldsworthy
JanGoldsworthy

@funnybuns25 Why does the hospital "owe" that to her?  And how long does the hospital have to continue paying this so-called debt?  Just asking.


Have Strength
Have Strength

Ok. Name one case where there was absolutely no brain activity and the person recovered.
I think you are confusing  brain death with comas or vegetative states, in which the brain continues to function to some degree. But brain death means the brain has died.  When it dies, it can never come back to life.

Andrew
Andrew

@ncdave4life @Cgfeebeee If you read the end of the first paragraph, it states "the hospital had agreed not to remove the ventilator."  This clearly states that she is not breathing on her own.

JanGoldsworthy
JanGoldsworthy

@ncdave4life @Cgfeebeee The article states clearly that she is on life support and a ventilator.  It also states that she has a feeding tube.   And that she has been declared "brain dead" as there is no brain activity.  You might want to reread the article.  It indicates that if the ventilator is turned off, she will not survive.  I would think those constitute "extraordinary measures".  I realize that you are pro-life but in all reality this child is not alive.  She is being maintained by mechanical measures.  I feel very bad for her family.  It is horrible to lose a child but this child is gone.   Prayers that the family finds some peace and lets her rest in peace.


veralesh finkle
veralesh finkle

@Have Strength case in fact ruth schwan, Ashland oh, brain dead. shes alive and well today, that was 37 years ago. so put that in your pipe and smoke it.

MariMetler
MariMetler

That is not true.  There have been books written about coming back from brain death and the last one was written by a neurologist that was brain dead.

cutieheart757
cutieheart757

@ncdave4life @Cgfeebeee I read the article .... THEY did remove her respirator and she could NOT breath on her own,she has never been able to AND she wasnt in a coma ,she was completely brain dead,there is a big difference.Her brain is liquid now.Get all the facts. I do feel bad for the family and its their choice to do what they feel is best and nothing to do with money should even be mentioned.However she has more children she is neglecting by doing so much for a child that is already passed on.It's all sad.I do feel it could have been prevented if the hospital would have acted sooner,when she first started bleeding,besides just giving the mother a cup to catch the blood in....that really bothers me!!!

JanGoldsworthy
JanGoldsworthy

@TacticalTaco If the parents decide not to believe the doctors, then this child should be moved to an extended care facility. I know it sounds cold but hospitals were not designed for months of extended care.  The are designed to care for and release patients with a much shorter period of time. Extended care facilities are set up to keep working muscles, spending time communicating with patients, etc.  I know this must be a terrible time for the parents and family members.  My prayers go out to them that the find peace in their lives. 

TacticalTaco
TacticalTaco

@Jujugirl  No, it should be up to the doctor to decide whether the patient should be revived.

However the doctor should have a duty to exhaust the best possible experimental treatments that have been shown to work. This is how we save the most lives, not by letting the family throw dice. Sure, this could mean the family wouldn't be happy about not being able to put someone "out of suffering" (they aren't suffering in reality if there is no brain activity), but it without it it would lead to families either choosing to hold false hopes that inevitably are destroyed or putting a patient to death that perhaps could have survived.

Jujugirl
Jujugirl

It should be only up to the family on how they want to deal with it.  Not the doctor's or anyone else.  They should have that choice.

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