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Too bad they can't put everyone who is against stopping life support in a hospital bed and hook them up to a ventilator for a week. Give them a whole week to imagine living their whole life like that with NO HOPE of ever getting out of that bed.
This little girl is NEVER going to get better and her mother is in denial.....and those who encourage that denial, giving her false hope, are despicable.
Just because someone can be kept alive doesn't mean it is ethical to keep that person alive.
Agree which is why I tried to find out more. According to what I've read, the hospital has given no physical health reason for their decision to remove her ventilator, they've only said their own ‘quality of life’ judgments
Too bad they can't put everyone who is against stopping life support in a hospital bed and hook them up to a ventilator for a week. Give them a whole week to imagine living their whole life like that with NO HOPE of ever getting out of that bed..
And then, what? Give them a choice to end their suffering and elect to discontinue the ventilator? If you are going with this theory, then the patient is still making the choice. But in the case of this baby, neither she, nor her parents, are making that choice - the hospital is.
I am not against choosing to de-escalate care and allow a natural death. I am against not having the choice.
I also have to wonder if the mother (age 20) and/or baby's insurance had anything to do with them not wanting to accept her. Possible they do not accept her insurance.
As someone who has worked in one of the elite hospitals on this list (Texas Children's in Houston, which is the largest children's hospital in the world), I can say with some degree of confidence that while insurance (or lack thereof) could be a factor, it probably was not *the* deciding factor. Fact is, large academic children's hospitals have a huge, huge percentage of patients who are uninsured or underinsured, much more so than most adult acute care hospitals. It's only because of cost shifting to well insured patients, exhaustive lobbying of state and federal government officials, and robust development and fundraising efforts that these hospitals can offer the excellent level of care that they do. These are facilities filled with many kids who would have died as infants just a generation or two ago.
This baby has a condition that is incompatible with life. It's heartbreaking and unfair for her and her family, but it's the truth. I find it very hard to believe that her family has not been aware of that since the beginning. Perhaps her mother, as a coping mechanism, doesn't understand, or cannot accept, that reality, but it's still there. I also believe that this girl has been well and lovingly cared as much as possible her entire life and the family has been treated with compassion. Maybe everything the hospital has done isn't perfect, but still overall, I know how these facilities and their physicians and staff care for their patients and do the best they can.
I have not walked a mile in this mothers shoes. Only half a mile...so I understand her "hope filled heart" and perpetual love for the child. That takes precedence in her mind. How could it not?
The cruelest of realities is the child's condition is not improving . It's sustaining. Based on a machine.
The child at this medical stage ...is lingering on a machine.
No mother can see down the road or decades later when she is plain angry and weary from the bills and 24/7 care. Then when she is gone. Who will tend to the offspring. No. To think that far would then make it clear what the compassionate thing is to do. It is a present and future thought to weigh out. I'm the last one to tell someone to keep a child if the prognosis meant suffering. And that suffering can be for the parent .....
And then, what? Give them a choice to end their suffering and elect to discontinue the ventilator? If you are going with this theory, then the patient is still making the choice. But in the case of this baby, neither she, nor her parents, are making that choice - the hospital is.
I am not against choosing to de-escalate care and allow a natural death. I am against not having the choice.
Not sure what you mean by de-escalate. To me, de-escalate would be slowly removing care as in cutting her oxygen supply in half instead of totally removing it or lowering her calorie intake to weaken her.....which I would call torture.
A natural death would be to remove all medical intervention and let nature take its course......however....I do think she should be sedated when life support is removed.
Keeping her on a ventilator until something else goes wrong with her that will kill her is hardly "natural" and will only prolong her suffering.....and there is no doubt, that little girl is suffering.
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"I don't understand. But I don't care, so it works out."
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There isn't much information provided about this child's history - which obviously is short.
I looked up her condition - Ebstein's Anomaly - and apparently the average lifespan is 38 years. So at one point, this family had great hope that she'd have some qualify of life, and would reach adulthood. Then, there were several surgeries performed on her which I'm sure added hope of improvement.
She's only 9 months. They haven't had time to process. Add to that, everyone's heard miracle stories and I'm sure they're holding on for a miracle.
Too bad they can't put everyone who is against stopping life support in a hospital bed and hook them up to a ventilator for a week. Give them a whole week to imagine living their whole life like that with NO HOPE of ever getting out of that bed.
This little girl is NEVER going to get better and her mother is in denial.....and those who encourage that denial, giving her false hope, are despicable.
Just because someone can be kept alive doesn't mean it is ethical to keep that person alive.
Plenty of people live on ventilators for longer than a week with no supposed 'hope' & they disagree.
They live in fear of going to the hospital because of the ableist views expressed here of ethics & 'worth'. Excerpts from an article on
'NOT DEAD YET; a national, grassroots disability rights group that opposes the legalization of assisted suicide and euthanasia as deadly forms of discrimination':
Quote:
I am a 55-year-old white man who is a quadriplegic based on a spinal cord injury in 1984. The level of my injury was at the fourth cervical level, resulting in near-total paralysis below my shoulders.
I talk with other severely disabled people, we all experience stark terror in a hospital. So often, staff think that our lives are pathetic or pitiful. Some nurses ignore our call requests. We swap stories of the horrors, but we all agree that we must be as sweet and compliant as humanly possible in order to hope for decent treatment.
I know people in my community who have been badgered about having a DNR. We hear stories in the media about disabled children having DNRs slapped on them. We have friends who use ventilators and don’t think that they are extreme interventions. Two of my best friends – a writer and a playwright – used ventilators for years.
How many babies have been diagnosed while in utero as having 'unsurvivable' disorders who were not aborted & are living happy, healthy, love-filled lives now? Many.
Do you know there are people alive today that had to hear 'professionals' urging their families to pull their plug while they were in a coma?
Does anyone even realize how many medical errors are committed every day? How much of 'the good old boy' network is alive & well in medicine? Has no one here experienced more difficulty recently finding a physician who would listen to them or obtaining a second opinion than they would have 30 years ago?
Is this not foreboding?
Thankfully, I found that NOT DEAD YET has already heard of this little girl & they have swung into action. From their wheelchairs, from their hospital beds & some while hooked to ventilators, while all of us non-disabled people sit here & speculate on her 'quality' of life & the 'ethics' of continuing a life that we didn't bring to life in the first place.
This is about MONEY. The amount of money it will cost to keep her alive & the amount of money they could make from her organs. As the mom of a disabled child, I hope I live forever before they come for him next.
There isn't much information provided about this child's history - which obviously is short.
I looked up her condition - Ebstein's Anomaly - and apparently the average lifespan is 38 years. So at one point, this family had great hope that she'd have some qualify of life, and would reach adulthood. Then, there were several surgeries performed on her which I'm sure added hope of improvement.
She's only 9 months. They haven't had time to process. Add to that, everyone's heard miracle stories and I'm sure they're holding on for a miracle.
This story is just so very sad.
Those are people who have a mild form of the anomoly, in this little girl's case it is obviously severe.
She has had multiple surgeries that didn't work and she also has "chronic lung disease and severe chronic pulmonary hypertension."
She has multiple problems, not just Ebstein's Anomoly.
Not sure what you mean by de-escalate. To me, de-escalate would be slowly removing care as in cutting her oxygen supply in half instead of totally removing it or lowering her calorie intake to weaken her.....which I would call torture.
A natural death would be to remove all medical intervention and let nature take its course......however....I do think she should be sedated when life support is removed.
Keeping her on a ventilator until something else goes wrong with her that will kill her is hardly "natural" and will only prolong her suffering.....and there is no doubt, that little girl is suffering.
"De-escalate" is the medical word for stopping the ventilator and allowing the patient to die.
"De-escalate" is the medical word for stopping the ventilator and allowing the patient to die.
Thanks, didn't know that.
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