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Status:
"I don't understand. But I don't care, so it works out."
(set 7 days ago)
35,630 posts, read 17,968,125 times
Reputation: 50652
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Quote:
Originally Posted by Annie53
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.
Right.
I'm talking about the family's experience with accepting this, and the likeliness they had great hope (and were given reason to hope) and now everything has changed.
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.
I wish we knew what surgeries she's had. Hard to know much when the info is just not there
Quote:
Originally Posted by coschristi
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':
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.
Thanks for the link. I found this FB page from their bit about her. Very interesting that they did tell her on a Friday, so the reality would be they gave her 5 work days to deal with it. She's very lucky she has a few organizations standing with her.
There was talk last night about how two weekends are often involved when this 10 day rule is invoked. We learned this today.
~ Hospitals use the following strategy so that the 10th day is always on a Sunday at 5PM. They give a family a letter of notice on a Friday at 4:45 pm, which is day #1. Days 2,3 and 9,10 are weekends. This leaves days 4,5,6,7,8 as days where you can actually contact the administrator of another hospital, so you really have five days to find healthcare for your loved one. If a hospital would want you to be successful, they'd tell you at 8AM on day #1, and they'd choose ten days that only have one weekend in them.~
This is WRONG. This law could effect any family in the event of an accident or tragedy. This isn’t putting Tinslee’s best interest first. This law HAS to change. We supported the proposed changes for this law last session, but lobbyists squashed it and legislators come together and stop them.
This family was set up to fail from the get go. So keep praying. We are counting down on the clock once again. .
If that was my child I would with draw life support. I was a Respiratory Therapist for 25 years. I've seen the suffering and I know intimately what goes on in the day to day life of people on life support. Prolonging the agony of a baby would not be my first choice. Reproduction is an imperfect process. I lost my 5 year old cat last month because his heart was gone. None of us is guaranteed a long life when that egg develops.
This reminds me of that girl in California whose parents did the same thing. The grandmother gave her a popsicle or something that caused her to hemorage into brain death.
They were able to transfer the girl but she later died.
I think it was a 100+ page discussion here on City Data.
This reminds me of that girl in California whose parents did the same thing. The grandmother gave her a popsicle or something that caused her to hemorage into brain death.
They were able to transfer the girl but she later died.
I think it was a 100+ page discussion here on City Data.
Not the same thing at all actually. That young girl had been declared brain dead (and yes, you are right - we had a lengthy discussion about brain death here). This baby is not brain dead. She is dependent upon a ventilator and has a very bleak prognosis and requires sedation in order to tolerate the ventilator, but when her sedatives are weaned she becomes more alert.
Her quality of life is poor and this is certainly not what I would want for my child's life, but she is not brain dead or clinically dead or any sort of dead. Yet.
End of life decisions are a tricky thing. My Mother had an advanced directive, I knew it, the hospital knew it but no one could find it when a decision needed to be made. Everyone looked and could not find it. I spent a week in the hospital with my Mother on life support. The doctors would try to get me to agree to remove life support and I cried and cried through all the conversations. I could not do it without the paper. After a week her body gave up naturally.
She had arrived at the hospital in an ambulance and when they intubated her they put her clothes and belongings paper bag in a locker. They had gone through her purse looking for her advanced directive, I had looked all around her home. When they gave me her clothing in a paper sack after she passed away I found the advanced directive in the inside pocket of the jacket she was wearing that day. Her instructions were on her body and we didn't know.
Until you are in that situation you don't know what you would do. I was in angst and agony, my Mother was only in her mid-60s and I wanted her to live. I did not want to make that decision even though her quality of life wasn't going to be there. I just could not remove life support, 15 years later reading this post I remember the indecision I felt. I would still do things the same way. If I had the AD in my hand I would have said yes, without it I could not say yes.
Unless you are in that situation you just do not know. You can say if it were me I would do XYZ, until you are standing in a hospital with a beloved family member on life support you do not even know what XYZ is.
End of life decisions are a tricky thing. My Mother had an advanced directive, I knew it, the hospital knew it but no one could find it when a decision needed to be made. Everyone looked and could not find it. I spent a week in the hospital with my Mother on life support. The doctors would try to get me to agree to remove life support and I cried and cried through all the conversations. I could not do it without the paper. After a week her body gave up naturally.
She had arrived at the hospital in an ambulance and when they intubated her they put her clothes and belongings paper bag in a locker. They had gone through her purse looking for her advanced directive, I had looked all around her home. When they gave me her clothing in a paper sack after she passed away I found the advanced directive in the inside pocket of the jacket she was wearing that day. Her instructions were on her body and we didn't know.
Until you are in that situation you don't know what you would do. I was in angst and agony, my Mother was only in her mid-60s and I wanted her to live. I did not want to make that decision even though her quality of life wasn't going to be there. I just could not remove life support, 15 years later reading this post I remember the indecision I felt. I would still do things the same way. If I had the AD in my hand I would have said yes, without it I could not say yes.
Unless you are in that situation you just do not know. You can say if it were me I would do XYZ, until you are standing in a hospital with a beloved family member on life support you do not even know what XYZ is.
Even without an advanced directive I know what everyone in my family would want and they know what I want and that's not to be kept alive, hooked to machines. My daughter is the only one that doesn't feel that way and I would do everything in my power to honor that.
My dad had terminal leukemia in 2006. Once the doctors said no more treatment I made sure there was a DNR on the front door, his bedroom door, both sides as well as over his bed because we couldn't trust my mother to honor it if I wasn't there. His advanced directive was also easily found plus I carried a copy in his medical binder in a tote bag I had for him. Thankfully we didn't need the DNR
If this baby was my child and could not get a heart transplant and was in pain I would let her go. I have not read anything about a heart transplant for her yet and I wonder why. I would also donate organs.
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