Mom fights to keep baby on life support

DALLAS - A woman at odds with a hospital over whether it would be futile to continue life support for her 11-month-old son has been given two weeks to find a facility willing to take the baby.

Daniel Wayne Cullen II was hospitalized in early April after suffering from a lack of oxygen when he pulled out a tube that was helping him breathe. He had a tracheotomy after his premature birth.

Brian Potts, attorney for Daniel's mother, Dixie Belcher, said the boy is in stable condition and exhibiting some brain function, but not at normal levels. He's also on a ventilator and feeding tubes, Potts said.

Last month, the ethics board of Children's Medical Center Dallas agreed with the child's doctor that continued treatment would be futile.

http://news.yahoo.com/s/ap/20060616/ap_on_re_us/life_support_battle

swooping in to prevent a heinous tragedy?

I think I'm going to withhold criticism on them on this. I hate this law and if the pro-lifers actually do too, then I have no bones about working with them to get it repealed. This is truly frightening to me to have bureaucracies deciding life and death.

Well said.

There's a deeper issue here than just politics, as you rightly have discerned.

Peace.

http://www.clydelewis.com/dis/corpse/corpse.html

Pain, suffering and indignity don't seem to factor
into some right to "life" arguments.

If MY babies were suffering and faced a "life" of brain
damage and breathing machines, I'd let them go.

The hospital administrator, the governor, or YOU. That's the point.

Who should pay for it?

I flatly reject that. When we start pulling the plug on people over money, we are no longer human.

Science lets us keep bodies "alive" after
brain functions have ceased.

I don't think insurance companies should pay
for that.

Not government, not hospitals, not insurance companies. WE pay for all of them, through our taxes, our premiums, our hard earned cash. WE own the government and businesses, they don't exist without our money. We have a right to tell them how to operate and that they won't be pulling plugs without the consent of the family.

the "decision" is already made.

Part of the reason insurance is so expensive is that they end up paying millions of dollars to keep people alive that can not live on their own...premature babies, those with terminal illnesses, people in comas. That payment comes from each of us that pays for medical insurance. What about all of those people that can no longer afford insurance because of the high premiums? How many others will die because this one child was kept alive at a cost of millions of dollars? It is not putting a price tag on life, but those millions of dollars could help many people live instead of one brain damaged child. Just because we can keep someone alive with science does not mean that we should. As a society this is a lesson we must learn.

During med school I did a pediatric intensive care unit rotation and cared for a child in a worse situation. CT and MRI showed progressive brain dysfunction and there was a minimal amount of reflex function, but no independent movement. The child was on a ventilator, needing constant turning due to atelectasis (lung portions collapsing) and would have continuing pneumonias and tracheitis with all sorts of bugs due to the tracheostomy. After a year, the father had come to terms with his child's state, but mom held out hope that God would intervene and that taking the child off life support was not natural. It was sad to see, but she of course held the final choice in her hands.

And this siuation is completely different than the Schiavo one - there's no desire to end life support here.

After that, the average fundie couldn't care less. This is the strongest proof possible that fundie 'right to life' crap has nothing to do with the sanctity of life and everything to do with putting women 'back in their place.'

Read about what happened to my family when St. Luke's Episcopal tried to pull the plug on my 54 year old sister. Pull a google search and see all the "fundie" sites that carried that story. Call St. Luke's and ask them how many "fundies" called that hospital and drove them CRAZY and put so much pressure on them that they were absolutely terrified to kill my sister.

Did you really mean the hospital killed her - or instead discontinued measures keeping her alive artifically?

Consists of saying

Those hoors and loose women should NEVER get abortions

They are evil tramps who deserve to get pregnant

</sarcasm>

I had an aunt that use to spout this shit.

foaming at the mouth about cases like this proves to me the point that their stance against abortion is not about "saving babies," it's about controlling women.

That's why they don't give a damn about "life" after it leaves the womb. It's always been about "if he gets her pregnant, then by god, she's going to have that baby!"

Sign a meaningless piece of paper, post haste!

When it comes to euthanasia, you can't fault the fundamentalists. On this one, they are fighting for everyone's rights. And they fought tooth and nail for my sister's right to live. God knows what would have happened if they hadn't. And GUESS WHAT? They found out about my sister when I posted on DU! They didn't care whether we were Democrats or Republicans. They fought for my sister's life--they put aside partisan differences to do it, too.

Oh wait - pro-liars want government to make certain medical decisions. Never mind!

but I'm sorry, I still don't count the fundy/pro-life crowd as the good guys since they want to ram their religous views down the throats of women everywhere. Go get yourself an unwanted pregnancy and report back to us how helpful they are.

Julie

And I think that you experienced the fact that not all "pro-lifers" are rabid, misognyist, hate-spewing fundies.

When we characterize them that way--as some posters on this thread are doing--we diminish ourselves and become just like the Limbaughs and Hannitys of this world that we so despise.

I'm very liberal, but I live in a very conservative area. While there are certainly conservaties who are repugnant, many that I know are very sincere and heartfelt in their beliefs and have no ulterior motives. I disagree with them, but I do not despise them.

I appreciate your bravery (!) in posting your comments on this thread. That's the kind of open-mindedness that we ALL need--liberals and conservatives both.

I tend to be overly black and white about the fundies, but you're right.

It's sickening to me that a hospital could decide the life and death of people, over their loved ones.

It's also sickening the way some people here are talking to you.

Sorry to hear of loss of your sister.

What if your family had made the decision, based on your knowledge of your sister and her desires, to pull all artificial means of life support? How would you have felt then, when those very same people were interfering in your family's private medical issues?

Those people are not your friends just because they happen to agree with you that life support should have been continued. They don't care whether that was what your family wanted or not, just that it comports with THEIR beliefs and that THEIR beliefs should be what prevailed.

Your family and the lady in the OP have the right to make medical decisions for your family, and it's no one else's business what you decide. Neither the hospital, the state nor the fundies should be able to force you to make a decision that you otherwise would not have made.


"When it comes to euthanasia, you can't fault the fundamentalists."

Yes, I can. They are not fighting for everyone's rights, as you allege, since they oppose my right to die in such a situation. That's not fighting for everyone's rights- it's fighting for THEIR beliefs to be imposed on others. They are no different on this issue than they are on choice.


I am very glad that your family was able to make the decision for your sister. I only wish that ALL families had the right to make that decision as well, regardless of the option chosen.

I know have ever had a problem with 'pulling the plug'. My dad and sister are fundies, but they respected my mother's wish and just let her go.

There are people on both sides of the aisle who want to tell us what we can with our bodies - from smoking to abortion.

My mom and dad have been gracious and helping to many people and did not judge a person based on which lever they pulled in an election. My grandfather was a republican mayor, my uncle a democrat one. My best friend is gay, and they have no issues with it at all.

Their 'fundyism' extends to themselves and how they live their life.

And then there are elected dems I personally know who are racists, blatantly so.

Every tree has some bad apples on it. The more WE label people and judge them on that label the more we promote hatred of others based upon our bias.

If the child has some brain function, it may be possible for him to recover better than an older child. This really smacks of being all about money.


CPS spokeswoman Marissa Gonzales has said Daniel was removed from Belcher's custody because there was reason to believe there had been neglectful supervision and medical neglect. Her parental rights have not been terminated, Gonzales said.

I can't help but wonder if these words really reflect an exhausted parent who may not know about everything she needs to do to medically take care of this baby.

Bush is such a pig for signing this into law. He's only "pro-life" if a person has money.

to pay for it. We're such a Christian nation.

Because, you know, this isn't a personal matter or anything. Sounds like another perfect setup for an election year crocodile tear photo-op for Republicans to fall all over themselves to take advantage of ... again. :eyes:

I'm not taking a position on this other than it's none of my business. And none of Congress' either. Remember, Texas has that law (signed by then-Gov. GWB) that says hospitals can pull the plug basically on a whim. The law is unethical, immoral and an intrussion into personal matters. I feel for the mother, but I'd rather not make her business mine unless asked to do so by her.

is that this law or one similar to it could be used against us. Otherwise, you're right- so long as her wishes (either way) are being implemented, it is a private matter for that family.

Bushie boy, as gov, signed the law allowing hospitals to remove patients from life support if they couldn't pay their bills...gotta save a hospital a dime.

"...as governor of Texas, Bush signed a law which gave hospitals the authority to take terminally ill patients off of life support against the wishes of their spouse or parents, if the doctors deemed it medically appropriate or if the family could no longer afford to pay for the health care costs."

<http://en.wikipedia.org/wiki/George_W._Bush>

I don't know how many times I've heard stories about doctors who said a patient wouldn't recover or would be a vegetable and then ended up being dead wrong. As a matter of fact, I personally know of a case where doctors recommended they pull the plug on a woman. Her husband took a stand and fought for more time. She woke up a couple of weeks later and has recovered almost 100%.

This baby has only been in the hospital since mid-April. I think he needs to be given more of a chance than just 2 months. I understand that they can't keep everyone artifically alive for years and years. But give the kid a year, or at least 6 months before calling it futile.

My grandmother had a stroke and went into a coma back in the early 90s and the family was told she was hopeless and would remain a vegetable. We were advised to stop life support and prepare funeral arrangements. Because my grandmother had said she wished to continue life support if ever in that position (yes really), the family fought back and were allowed to keep her alive (she had great insurance, though). Three months later, she had come out of her coma, was in speech therapy and went on to live ten more productive years (she did need a wheelchair if she got overtired, but took to that quite well).

So I am against the idea that any bureaucrat be allowed make that decision for someone. It's awful to make the decision to begin with, but at least it has historically been the family's to make. When a stranger does it to manage the hospital's bottom line, well, that's just repulsive.

dissenting opinion: they have the opportunity (in fact, under the terms of the law they have the right) to find some other institution willing to provide care.

If another doctor at another hospital takes the patient, it may be inconvenient for the family, or more expensive, but the infant lives.

Some doctors rush to judgment.

heart that required surgery... after surgery at 6 months, she experienced heart and lung failure and was only partially oxygenated for nearly 1 hr while the doctor gave her heart massage...

She was then placed on ECMO (heart lung machine) for about a month. No one believed she would live. Everyone that even thought that believed she would be a vegetable.

It's not about miracles. My niece has severe learning problems and problems with her eyesight. She lives, walks, and loves like everyone else and have made it to the age of 12.

She is even a dance student of another DUer you know (ironically)!

I have also seen the heartache her family went through. It's not east to raise a child with multiple disabilities. Trust me, I have held her screaming in terror from 4th of July fireworks because her young nervous system just couldn't process the stimuli! It is very difficult.

This story reeks of mandated euthanasia at the hands of a greedy, cost-conscious medical profession. This should be in the hands of family and parents, not be coerced by medical doctors.

Tells you something, doesn't it?

Here is more info on his living environment. It's from the local paper's coverage on the baby back in a May 2006 article:

http://www.dallasnews.com/sharedcontent/dws/news/dmn/stories/053006dnmetlifesupport.12abef0e.html


Fourteen years ago in a hospital room at Children's Medical Center, she says, she struggled with another doctor's recommendation to remove life support from her 5-month-daughter, Jamie, who also suffered breathing problems. That time, Ms. Belcher consented. She can't do it again.

<snip>
On the day of Daniel's accident, the Grand Prairie detectives described a dirty apartment that reeked of smoke despite the boy's breathing problems and despite a sign on the door about his grandmother's oxygen machine.

On a nightstand to the left of the crib was an ashtray with five cigarette butts. Next to it were two packs of Marlboros. On the stove was a pot with meat and congealed grease. The sink was two-thirds full with baby bottles and nipples soaking in water that was cloudy, as if it had been there a while. Trash overflowed onto the ground.

"In the living area, I observed another filter that had been removed from the trachea that appeared to be stained the color of nicotine, leading me to believe that the child had been breathing in second-hand smoke," Detective Alan Frizzell wrote.

I'm not seeing how this kind of stuff should even be part of the discussion.

It is tragic if the kid was abused/neglected, (as that article implies,) but that should not have any bearing on the hospital's decision to pull the plug on this child.

What people should be looking at is the fact that this is a financial decision based on the ability (or lack of) to PAY for that child's care. To put it bluntly, you can and WILL die at the hands of a hospital in Texas if you are poor or poorly insured.


Laura

I posted it to provide some more background to the original poster's article...living in Dallas I had seen the family's/baby's story in the local media a while back so I went to DMN's website and found/shared it here.
It's added to the discussion for DUer's who want more info on the family/situation and NOT to defend the hospital. I know that as I read DU I appreciate any local articles that DUers post about news from their area that make national headlines...just trying to do the same.

a mom and dad spirited away their child from Children's Medical Center.
Their reason was that their religion didn't approve of medical
intervention. All I could think when I heard the mom talk was,
"Missy, you're wearing glasses. Shut up, take them off and walk
into traffic the way your lord intended."

It puts cost above human life. I've sat at many a death bed, and I fully support the right for self-determination, as in the Oregon so-called "euthanasia" law.
The patient or representative/POA has the right to decide when to stop heroic measures, not to code a patient, or even withhold nutrition and water. Many Living Wills have the option "I do NOT want artificial hydration and nutrition" or I DO want artificial hydration and nutrition. In this case, the grieving mother is saying I DO want everything done to keep my child alive. The baby, in all likelyhood will die in his own time despite what is being done. Maybe the mom isn't ready to let go, maybe she has faith that a miracle will occur, or maybe she is ready to take on the child if he survives no matter what type of damage is present. I don't know, and it's not my business.


This law says, hey WE don't care what YOU think,(sound familiar?) WE make the decisions for you. And if you don't like it, well hey, take your loved one to another hospital---If you can find one that will accept him/her, and good luck in surviving the transportation. It's inhumane, and a particular disgusting way to save money.

no good choices, really ...

ongoing care really is futile, and it really IS in the child's best interest to be allowed to die. Witness the case of Baby K (Google is your friend) in VA (which started this issue of "futility", and became really ridiculous). The baby was anencephalic, which means he had a brain stem (reflexive functioning such as heartbeat, and marginal respiratory function) and not much (if anything) else - NO cerebral cortex. No hope of ever having any self-awareness or any cognitive functioning. The mother INSISTED, for 8 or 9 months, that this baby be kept alive, which, while feeling sorrow for the mother who mourned the loss of her dream of a normal baby, still became a ridiculous situation. Here is a picture of what an anencephalic baby looks like - the entire top and back of the head (where the brain would be, if there was one) are missing: WARNING- graphic: http://www.pathology.vcu.edu/WirSelfInst/devdis.html

Now, there are plenty of "gray area" cases, and without knowing the details of this particular baby's neurological functioning it is impossible to judge "futility" while sitting here at my keyboard. However "futility" really is a valid concept. The continuing heroic care of an anencephalic infant really is futile. In other, not so black-and-white, cases a great deal of care must be taken in evaluating the situation. I do know that these "ethical committees" are not just composed of heartless, money-grubbing doctors and administrators. Generally someone with an extensive background in ethics, often a clergy-type, is involved.

Life is not always better than death.

And yes, the family should have a fairly large say in the decision - but when limited resources are being used, and in some situations, the time does come to say "enough is enough". Clearly Baby K's mom went way past that point, and tens or hundreds of thousands of dollars, and hours and hours of nursing care,etc, were spent for no good purpose.

Life is full of gray areas, and is not often black or white. And while the medical establishment often does evil things, they are not ALWAYS evil.

The issue shouldn't be tens and hundreds of thousands of dollars because there's no good purpose for those high costs anyway, except to turn doctors into millionaires and fill up the pockets of people like Bill Frist. That's what you're saying, it's more important for people to get rich than for a parent to have the peace of mind to know they did what they could to save their child. Money over people, screwed up priorities, upside down values, that's the problem in the world right now.

NOWHERE did I imply that "it's more important for people to get rich than for a parent to have the peace of mind...".
And did you even read about the Baby K situation? Was it right for that mother to INSIST that the hospital keep the baby on a ventilator for 6 weeks, then again place the baby on a ventilator multiple more times, month after month after month? This sounds crass, but to inject some reality - the level of neuro functioning of an anencephalic infant is about at the level of a pithed frog (like in jr. high biology class). The situation was hopeless, absolutely nothing could be done.

You clearly have an ax to grind, so I won't waste my breath (er, keystrokes) here.

Your position is that you think it's wrong for a hospital or insurance company to be required to pay the expense of keeping a human on life support at whatever point that you decide it's hopeless.

I know you think you're being economically practical. But when you think about what money really is, a pile of paper, then maybe you'll see it a little differently. It's all about piles of paper. People die because they can't push enough piles of paper from one stack to another. Nobody truly deserves or needs 10,000 more piles of paper than another, it's actually an illusion in a speck of time that means nothing. The intellectual contribution to mankind, now that means something. But it's meted out based on piles of paper.

Whether you realize it or not, you're supporting a system that says it's more important for people to fill their pockets up with piles of paper than to give a parent peace of mind.

Since people rarely do this, we're better off to sacrifice a few stacks of paper than to risk even more of our medical decisions to a system that has already proven it will readily dispose of us when we don't have their precious stacks of paper.

but i'd still rather be dead than be in a persistent vegetative state. i think there's a such thing as dying with dignity, and I'd rather go down with that in tact than live through tubes for another 10 years with my higher brain functions long gone.

The debate is whether that is your decision, or the hospitals.

end up in such a situation?

The Texas Futile Care Law overrides what the individual wants. The case in question is a baby so he wasn't able to make that decision anyway.

point taken.

We need to get his professional opinion on this...:sarcasm:

...and now I work in Long-term acute care,basically taking care of the people who have lived too long on the ventillator to be profitable.I have seen both families suffer due to wanting so badly for a loved one to improve,or wanting so badly to see a loved one die in peace instead of suffering using extraordinary means.Communication is vital between the various caregivers and the patient and their family.There does come a point,in some situations, when medicine has no more to offer.I would never advocate turning off life support on a living person,but i also believe in making someone as comfortable as possible when nothing else can be done.Hearing your child is dying is the worst thing a person can endure.Watching your child suffer because you can't make the decision to end his torture is also horrible.having the physician make that call has been a godsend for many of my families.It is hard to turn off life support.But sometimes,"life support" is actually 'death postponement",and is worse than an easy death.