when does it stop being for the child and start being about protecting yourself?

Allison - posted on 01/19/2012 ( 26 moms have responded )




I do realize some people will read this and find it heartless but please think on this because i look at it a different way. so we all have read about the little girl in PA who was denied surgery. but a year ago medicaid/medicare was under attack because it boots minors off it when they turn twenty, they can reapply as adults but there is a lapse in coverage during that time, ok so back to the story

a mother on a NPR program whos daughter was severly disabled both physically and mentally. its a truly sad story. this poor girl who now would be twenty one, has never breathed on her own, crawled, eaten, chewed, swallowed, and according to her neurologist (did i spell that right?) had a single cognitive thought. the poor girl is kept alive entirely by machines. she has no way to communicate. according to the dr (parents signed the waiver letting him discuss the case) the mother disagreed of course but the neurologist along with some kind of therapist said that no there was no communication.

she is kept alive entirely by machines there is no hope for her at all. she has never ever and will never ever be able to do anything at all not even dream.

so my question that i want every ones opinions on please with out emotion but with empathy, is what these parents doing right? keeping a person, a child alive who is unable to actually live or have the ability to appreciate thier lives right? is it fair to the child or possibly any sibilings? or are these parents trying to protect themselves from the inevitable heartbreak that comes with loosing a child.

i just wonder isnt it a really thin line on how ethical keeping these people alive is? i understand why they are doing it but shouldnt the child be put first? they arent keeping these kids alive for the child they are keeping them alive for themselves. these kids dont have a good shot at life.


Deborah - posted on 01/23/2012




I agree with you Denikka, it should be a person's choice if they want to live in pain and suffer, or end it.

Granted I'm fully mobile, and have also never had a child in this situation, but I think I would rather be able to go out and live a life, make my own decisions, rather than be stuck in a body, unable to do Anything under my own power. What if there is a consciousness inside that girl? Would you want to be trapped with no ability to communicate (since her brain is unresponsive to any sort of stimulation), with no ability to hear, just you in there, alone? What kind of an existence would that be for anyone? Sounds like a prison sentence of solitary confinement, and that doesn't seem humane to me at all.


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Sarah - posted on 03/02/2012




As someone who has worked with children just like that I can honestly say, it is not cruel to ask this question. I agree, sometimes QUALITY of life should be more important than QUANTITY of life. I would not want to live that way and as difficult as it would be for me, I would rather my children be happy and healthy running around heaven than in pain and suffering on earth with me.

Allison - posted on 02/24/2012




shes on medicare/medicaid so the government. the mother stays home with her since the state doesnt cover the nursing staff that they need. the state would cover a facility but i can understand why the parents dont want to put her there. and when asked about what happens when mom and dad die, mom very quickly changed the subject with out giving a real answer. I wish the state would step in at some point and take custody of this girl since the mother is not thinking about whats best for the girl. dad from his tone sounded like whatever his wife says goes. i wish some one would step in here who has no emotional attachment and make the decisions about this girl.

Karina - posted on 02/23/2012




Has anyone voiced the concern of what happens to the girl when the parents are no longer walking the earth?

and, who exactly is paying for this? insurance, private pay, or government assistance?

[deleted account]

What exactly is the point of this child's life? Aren't we supposed to be more than single celled organisms? I think it's dreadfully unethical to keep this going. Mom has major mental issues at this point.

Lyssa - posted on 01/24/2012




as a mother, i think we would all want our children alive. but, as a nurse, continuing to keep her alive is just not fair. i'm sure it would be a hard decision to make, but i could never to that to my child. she has absolutely no quality of life! i'm sure it would be one of the hardest decisions to make, but it's not fair to the child or the parents to watch her suffer day after day. they really should let her go and be in a better place. just my opinion

[deleted account]

I can't believe they've kept this situation going for 21 years. It's horrifying.

To all those who use the sanctity of life argument, what about all the resources that have been plowed into keeping this shell of a body going for 21 years?

I imagine hundreds of babies lives could have been saved through basic health measures using the same amount of money. What about the sanctity of their lives?

Merry - posted on 01/21/2012




Idk, I'd have to think it would be a while that I'd keep her alive on life support, is she growing? Changing? Does she look like a woman now? I might want to see my child grow up even if they are just a shell of a body.

But then again I think I'd want to let her go to heaven to be healed and free.


I simply couldn't say unless I was there myself.

But for sure I'd keep her on life support a few years. 21? Maybe not but I can't say for sure.

Denikka - posted on 01/20/2012




I am for assisted suicide. I am for humane euthanasia for ALL species, humans included.

I have never been in that situation. I HOPE I never have to be. I cannot say what I would or would not do in the depths of that kind of grief.

But I know, for myself, that I have already talked to my family and my hubby and made my wishes clear that if I am brain dead, in any kind of vegetative state or would be forced to live with my mental abilities reduced to the point where I was unable to care for myself in the most basic ways, that I would NOT want to be in that state. I would want them to pull the plug.

In my current state of mind, I would feel the same about my child in that state. 21 years is a LONG time. There comes a point where you need to just let go.

Personally, I think keeping a person who is brain dead *alive* on life support is just morbid. In essence, you are holding on to a well preserved corpse. And if anyone else were to do that, they would probably end up in medical care themselves for their own mental health.

I feel so sorry for this family, and any others going through something similar. They really need to get some help in dealing with their grief and letting go. In this case, it is absolutely for them and not for the girl any more.

[deleted account]

Not being IN the situation... it's very easy for me to say that is no life and she should just be let go. It IS the humane thing (IMO) to do.

If it were MY child though.... I don't know if I'd have the strength to let her go.

Allison - posted on 01/20/2012




hey tracey in America it may go to court but nine times out of ten the person is kept on life support. and i just want to make it clear this girl has been that way since birth its not like she was in an accident she has always been hooked up to machines.


this is the website where it has the original story and three or four follow ups as well as audio can be heard.

i appreciate peoples ability to talk about this with out getting catty or defensive as we all have probably noticed tends to happen with this kind of subject. and i admit even though now i say its cruel to keep them alive who knows what any one of us would do if it was our own child.

there were two people on here who lost somebody and i'm sorry for your loss. especially to the woman who lost her neice but you did make a beautiful point.

Tracey - posted on 01/20/2012




In UK doctors have taken cases like this to court to get legal permission to turn off the machines and let a child die, can this happen in USA?

What would happen if this girl outlived her parents - who would make the decision to keep / turn off the machines?

Kellie - posted on 01/19/2012




But without the feeding tube life wouldn't be sustainable as with removing life support.

So while different it is similar in that both things keep the person alive, remove them and the person dies.

As for humane, it would be humane to legalize euthanasia, but that's a whole other debate I guess.

Tam - posted on 01/19/2012




I realize that. I meant that it puts me in mind of the case, in the fact that the parents were unable to let their child go when the prognosis was pretty much a negative. The actual circumstances regarding the cases were wildly different and I know that.

I'm not to the point of agreeing with assisted suicide or euthanasia, but I cannot see the benefit of retaining automatic function when the is quite literally no hope of actual life to be lived.

Kellie - posted on 01/19/2012




But she was still being kept alive by the feeding tube just as this person is being kept alive by a breathing apparatus.

Take those things away and the person dies, different circumstance, same end result making the cases comparable.

Tam - posted on 01/19/2012




I have never been in that situation and with luck, I hope I never will. This topic reminds me a bit of the Terri Schiavo case several years ago.

My opinion here is the same as it was for that prior case.

Sometimes, the kindest thing you can do is the hardest thing to endure. Keeping a person alive for the sake of having a pulse is selfish. In many cases, the brain is already dead and the body is kept alive through artificial means and there is no coming back. It is far kinder to end the suffering of the body in cases like this, in my opinion. And if you believe in an afterlife, then it would stand to reason that keeping a vessel alive when it clearly would have - and should have - passed on is doing nothing but keeping the soul from reaching its ultimate destination.

I think this post from a newly minted doctor sums up my feelings on the matter. This is a perspective on life, death, and the frantic preservation of a life that is truly at an end from the viewpoint of someone who has what may be the most difficult job to execute: The doctor who is on duty at the moment this event occurs.


Deborah - posted on 01/19/2012




I don't think it's right. I have never lost a child, or known anyone personally who has lost a child at a young age but in this case...there is no child. They share no memories with her beyond sitting next to a hospital bed. The girl in question has no life, because there is no life to live...They are denying the reality of the situation...there is no one home. If she has no brain activity, then there is no one in there, she is a shell. I appreciate life support as long as it's supporting life, but life is more than working lungs and a beating heart. If I had a child like that I would keep them alive as long as there was hope, but once the facts were laid before me, I would chose to let it go, because there is no life there. Sitting beside a hospital bed is not a way to be a parent.

Amy - posted on 01/19/2012




I personally would never want that for myself but like Sherri I can't say what I would do if that were my child.

Becky - posted on 01/19/2012




No, I don't think it's right. I have never been through the loss of a child and I don't even want to imagine the possibility because I know there would be nothing worse. So I can understand what an impossible decision removing her from the life support must be for the parents. But she is really not even living. If she can feel love, joy, etc, she can't communicate those. I'm sure she can feel pain, and she can't communicate that either. I can see keeping a child with cancer or another lethal, but potentially curable disease alive even when the chances of them being cured are remote, in the hopes of a miracle. But in this case, there is no hope. There is no cure. I don't think it's fair to the child and I don't see how it is fair to the family either. Deep down, they know she is never going to get better, so all they have been doing is grieving for the past 21 years, because when you know someone is dying, you do grieve, even while they are still alive. I can't imagine prolonging that process over 21 years! It can't be a healthy way of handling it.

Hope - posted on 01/19/2012




My op is it is very selfish to be keeping a child like that alive, not only for the child but the other members of the family. I truly believe if there is no hope for that child then the best thing is to love the child and give them all the best experiences you can before they pass. Enjoy there short life with them, don't endure a long painful life with no or little joy.

My niece pass away on 19th August 2011 after just 53 days of life. She was an Edwards syndrome baby. While she was here we us she experiences a life time of things, she went on picnic, had a taste of ice cream, went for a drive on the farm in grandads ute, she had her first birthday at 1 month of age, the list goes on and on. Now when we think of our beautiful little angel we don't just remember her in hospital with tubes and wires, we remember her in her big floppy sun hat down by the creek, we remember her cuddles. I am glade I got to know my niece before she passed, not just through a glass window but by cuddling her and loving her.

Kellie - posted on 01/19/2012




I would turn off life support.

I fully support euthanasia (which I'm not sure this would be?) and cannot for the life of me, understand why you would continue to sustain a 'life' when there is no life.

Like Allison, I feel they are keeping this child alive for THEM and not the child and I find that selfish.

I watched my mother die from AIDS, and given the choice I absolutely would have given the ok to end her life at the end.

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