Right to Life Debate

I believe that quality of life is more important than quantity. Sometimes the best thing for someone is to let them rest in peace and out of pain. I can not say what to do with this child, he is not mine.

I've never been in such a situation but it seems like I'd do what I can to keep him alive and care for him. If I ever had to make a decision like that, I'd probably seek counseling about it. That would be terrible. I agree with you, though.

Keeping a person living, does mean they are alive. People can be waking dead. Just because as human being is literally living, does not mean they aren't also dead. They are trapped.

With that said, if it were my child...I just don't know. I can't even begin to imagine. I can't even conceive of how I would feel, or what I would do. It's simply impossible, for me to put myself in that situation.

I was forced to make this terrible, gut wrenching decision for my son. My son who I would have done anything in the world for. If I could have I would have gladly and even eagerly traded my life for his. Unfortunately, it does not work that way. My husband and I made the decision not to put my son on a feeding tube and instead brought him home to die in the comfort of our home and in my arms. I loved my son enough to let him go.

For those of you that think by opting to not use a feeding tube you are cruelly "starving your loved one to death" you are mistaken and I hope you do your own research to really understand feeding tubes. Don't get me wrong, I think there is a use for using feeding tubes in the case of people who will eventually recover from there condition but to just sustain life...I think it is a fate much worse than death.
I just researched some common myths. I hope anyone who thinks that this poor family is killing their child reads this...

 Myth:  A dying person who has become dehydrated due to lack of fluids experiences extreme thirst, pain and distress.
Fact: Dehydration in a seriously ill person with a terminal condition, and in the frail elderly, is not painful.  In fact, frail elderly persons have a blunted sense of thirst, which allows them to slip rather easily into a dehydrated state.  This is generally characterized by increased sleepiness and less mental alertness without other signs of distress.  In the dying patient, studies have shown that the majority never experience thirst, or only initially, and the thirst that occurs is easily alleviated by small amounts of fluids or ice chips given by mouth, and by lubricating the lips.
Myth:A person with advanced disease or a terminal illness who stops eating will “starve to death” painfully.
Fact:When a person with advanced disease or a terminal illness stops eating, usually it is because his/her disease has progressed to the point where the person is no longer able to process food and fluids as does a healthy person.  Forcing this person to eat, or starting artificial nutrition and hydration does not help the person to live longer, feel better, feel stronger, or be able to do more.  In fact, such a person given artificial nutrition and/or hydration will often feel bloated, nauseated, and/or develop diarrhea.  Studies have shown that the majority of dying patients never experience hunger, and in those who do, small amounts of food and fluids, offered whenever the person wants, relieves the hunger.

Some other facts about feeding tubes....

Like many medical interventions, all forms of artificial nutrition and hydration:
-Require the patient to undergo uncomfortable, and at times painful,
procedures for the treatment to be started;
-Have known side effects and potential complications, including serious
infections, fluid overload, nausea/vomiting and diarrhea, electrolyte and
mineral imbalances, and even death;
-Have indications (use of the treatment for patients with similar conditions has been usually more beneficial than harmful);
-Have contraindications (use of the treatment for patients with similar
conditions has been usually more harmful than beneficial);
-Hold very little similarity to a person sitting with family and socializing while enjoying a tasty meal.

If you are interested in learning more check out this link...http://www.americanhospice.org/articles-mainmenu-8/caregi...

EDIT: Giving someone nutrition through a feeding tube is considered extraordinary. Just 40 years or so ago it could not be done!

Well, it is the immediate family, along with their doctors, who have to make decisions for this child. I can't imagine that having others sharing their differing opinions is helpful to a family under this kind of stress. Of course I have an opinion on this subject, as we all do, but the family has to make their own decisions.

My opinion is that I could not watch my baby "live" like this and would not have brought him to the hospital after 20 minutes of not breathing. If there was brain function before, there is likely no longer after 20 minutes of oxygen deprivation. Breathing does not indicate brain function, it indicates brain stem function. Our brain stem regulates involuntary actions like breathing (otherwise we would die in our sleep). Our brain gives us the ability to think and feel. These are two separate and very different organs.

Having to deal every day with this child in this state is not a miracle. These people have been grieving for three years and should be free to complete their grieving and live the rest of their lives.

I'm an RN in a pediatric ICU; a significant number of our patients are exactly as you describe - no sight, no hearing, the inability to communicate or understand, the inability to have any voluntary control over bodily functions (including eating), basically the inability to do anything resembling human life.

That poor child may exist, but isn't living.

People talk about holding on because medicine is "so close" and "just about to" or "just around the corner from" a big discovery to "save" patients like these.

The reality is that while people are holding on for a scientific discovery that will probably never happen & more than likely be unavailable to them if it does, these families go through unalterable he'll. They may have home health nursing ordered (assuming their insurance covers it or that they can afford it if it doesn't) but there's a nursing shortage, particularly in home health. So shifts, mostly nights, go unstaffed & someone in the family has to pick up the slack. Most of the time, they end up financially devastated by the costs insurance doesn't cover. Marriages almost always fall apart. Other kids fall by the wayside. No more vacations, hobbies, time, money, friends ....

And the guilt they experience. While you're sitting there telling them what a miracle their child is, they're dying a little more inside because as much as they love their child, they want an END to everyone's suffering.

It's not a life.

While my personal opinion doesn't matter, and never will unless it's MY child in the hospital bed, I will say two things: 1). I think it's very unfair to make anyone exist in a way that you yourself would be unwilling to exist and B) what does it say that about us that if this were a dog or cat we were talking about, we would have allowed it out of its misery a long time ago?

If it were my child, I guarantee you it would never have gotten this far.

You know how annoying non-parents are with their "I would____, or would never do _____ when *I* have kids." comments? This is one of those. Reread JCs comments.

Getting to a DNR is HARD. Withdrawing support is even harder.

I've been blessed to be in room 3 times this summer while my friends' children died, and know 4 others who died at home, and 1 on table. I just came home from the funeral of my friend's 2yo weekend before last.

((living in a childrens hospital for a few months, or doing homecare will RAPIDLY change your opinion on many thing))

You say 'starve". MY first thoughts?
- Had their digestive system already shut down?/Were they able to tolerate any food in their stomachs? (imagine eating with food poisoning... when your digestive system shuts down it *expels* food. Both ends. Often aspirating on the vomit. In shut down or failure eating - even with an NG tube- it can be like pouring ACID down your child's mouth, or breaking a bone. EXTREME pain. Could you break your child's arm several times a day? ((Probably you could for awhile. But for how long?))
- What'rs their morphine levels at?
- Are they tolerating the NG Tube? (infections, ulcers, pain, emotional meltdowns
- Antibiotic resistant yet? Are they at the point of needing to be comatose
- Enough mucus or stomach / intestinal ulcers from the acids?
- Surgeries needed to repair perfed intestines, stomach, esophagus?

ALL of that pain and MORE (seizures and heart attacks from pain levels or electrolyte imbalance) 'just' from feeding. Vs none when foods (liquid) are stopped. You aren't hungry, and the pain stops.

Now, many kids can be on NG or G tubes their whole lives and be fine. Their digestive systems are still functional. You DON'T pull the tubes on kids who have a functioning system. You pull the tube when it's killing them. Your child IS ALREADY DYING. Stopping food dtops the PAIN that prolonging their life a few weeks is causing.

I ask you again; would you break your child's bones 5 time a day for an extra week to 10 days? Maybe. Or maybe you pull the tube and let them smile for the week to 10 days they have left. Or drop down to 1 feeding a day so they're only in agony half the day. Or, or, or.... Until it's YOUR child... you don't know.

And that's JUST the NG Tube. Trachs and Trach care, PICC LINES, RT, dialysis, chemo, surgical options, interventional radiology, meds meds and more meds, the first time your kid codes... how to pay for a headstone, how to pay for respite care (2 nursing shifts are a MUST... IT'S IMPOSSIBLE TO DO HOMECARE WITHOUT 3 SHIFTS), training your nurses, fighting with idiots (but it's "just" a cold, fighting with family (esp absent family who wants to make decisions)... A medically fragile child is 3 fulltime jobs... and they're still your BABY.

And yes. Those cursed with rare disorders OR mystery disorders are well aware that thier child's suffering is helping others. I FOR ONE... HATE IT. It infuriates me when people trying to make themselves feel better use MY KID like a pawn. ((I don't mind med pros. I can joke with ,my son's doctors. I can joke with other families. But my son is not "at least" anything. My son is my whole world. I would NOT trade him for another child's life. I don't care how selfish that makes me. He's MY kid. His disease isn't what makes him special, or worthy... and neither is what he can do for others. Nothing makes even the idea of losing him better. That doesn't mean that you don't go ahead and make arrangements, and run tests, and do all the stupid logistical science stuff. But unless you've been where the buck stops... I do NOT want to hear 'justifications' for his life or his death)).

I don't think this is a question you can honestly answer unless you are in that horrible position of having to make a decision for a child such as this. All we can do is pray that the people who have to make such a difficult decision find a way to make their peace with it. We absolutely should not judge or advise them.

I think this little boy made a decision that God, apparently, agreed with.

I think it's very easy for us in cyberspace to say what we "would" and "would not" do and wax poetic about quality vs. quantity, but the bottom line is...we just don't know until we are actually walking in those particular shoes.

Something tells me that if it was my child, every day, I'd thank God to be able to use that feeding tube for another day.....

The big problem with this world is we are so quick to terminate a life when we dont want it or its not planned or looking at it makes us uncomfortable.....The truth is he is living and breathing...he is a life. And he is Loved. It is horrible to us because we live normally; this life is all he knows. It would be very inhumane to remove his feeding tube...Do people realize how long it takes to starve...maybe they should try and see how long they can go without eating?? And we should never judge others because you can NEVER know what you would do unless you were in that situation.
God bless you and your family.

I completely agree with Teresa on this. Unless you have lived this with your own child, you cannot possibly understand. Neither can I, thank God. If I were you I would not give my opinion in any way whatsoever. You say your family gets mad when you say that his survival was a miracle. So don't say this! True they are probably very senstive and hyper-reactive right now, but who wouldn't be? They have already suffered so much. Focus on trying to do what will help them. It is their child. They are the ones that have experienced their child suffering 24/7. Ask what you can do to help them without any commentary (even to extended family). There is true grace in helping them through this in this way.

For me it comes down to brain function. If his brain is functioning (and if he is breathing on his own then he has brain function) then I think he should have the feeding tube. So I agree with you there. However, I would certainly have a DNR for the child. No life saving measures should he stop breathing again, etc. because I do believe that quality of life is just as important, if not more so, as sanctity of life. I would also do whatever was in my power to donate any viable organs upon the child's passing. Finally, I would keep my opinion to myself if I were you because it wouldn't be my decision to make and clearly my opinion would be upsetting to the child's caretakers. I am sorry for the situation in which your family finds themselves.

ETA: Just an FYI - I have been through this. Not with my child but with another family member who had ALS. There comes a time when you have to let go because it is for the best for the individual regardless of your personal feelings. Until you are the one caring for someone who does not have basic life functions you are in no position to tell others in said situation how to behave or to call things a miracle or to otherwise insinuate that whatever decision they come to is the wrong one.

I can't imangine anyone thinking it is OK to starve this baby to death. Who knows if tomorrow isn't going to be the day that there is a break through for this childs health probems. I believe in miracles. If this baby is not in pain thatn helps, but to starve him? this is not an easy situation to be in and it's easier for us who have never gone through this to say what is right or wrong, but until you do experience it you just don't know. Were paramedics called, and did no one know infant CPR for this child to be with out oxygen for 20 minutes? I will keep this child andf this family in my prayers. J.

I have begged my mom if something happens to me and I am breathing but need to be tube fed for the love of God DON'T deny me a feeding tube. I think that this baby has showed he wants to be here! I think I agree with you. I hope this baby proves them all wrong!!! I pray they don't pull his tube! My son was perfectly healthy despite a few problems that resulted in a feeding tube and I can't imagine having denied him that nutrition. Look at Helen Keller. Some would have said she was better off passing and she achieved so much!

Please keep us up to date on the outcome of this incredible situation...

I'm adding that I have never been in this situation or known anyone in it, so I can't say for 100% what I would do. There are 2 sides to the story. It is very heart wrenching though...

Also, I want to add to J C. from Philadelphia that it's wonderful that you answered this post. I think none of us can say what we think w/out being there like you have. My heart goes out to you and your son. :-)

I think they made the right choice to take him home to die. But, he didn't die. I wouldn't be able to watch my baby starve to death. I honestly don't think I'd be able to live with myself if I did that. If they are going to die in other ways, and if medical intervention was going to keep them alive (beyond a feeding tube), I would choose against the medical intervention and let nature take it's course...but that wasn't an option here.

Without knowing the full history of this sweet little person, it's hard to say. Perhaps there were other times that he should have been allowed to pass, but they didn't allow it.

But in this specific case, he's breathing on his own...how can you starve him to death? And, whose to say what he experiences in his life. It may look awful to us, but perhaps he enjoys, in his quiet way, being close to his family.

One thing I've learned in my life, from my daughter who was born with a fatal disease (though she lives a much more normal life!), family and friends can be a real stress when it comes to decisions. They think they know what is best when they don't. They don't ACTUALLY know what it's like to be the parent to a child with major health issues.

Sometimes I find myself getting too upset at family when they judge our decisions...but most of the time I find a way to distance myself and remind myself that they don't really have a clue what they are talking about....it's just really annoying when they think they do. You simply cannot truly know what you would do unless you are in those exact shoes...no matter how much a person *thinks* they know what they would do.

I hope and pray that this family is blessed in knowing what decisions to make and that the Lord will watch over them. What a tough situation to be in!

How is his brain activity?

If his brain is functioning then he could be considered to have a life, even though bless his heart, would you want to be in his body? Never able to even communicate?

If there is no brain activity, yes his body is being kept alive, but he is not there, it is a shell of the boy. That is a lot of energy and resources that could be helping a child with a functioning brain.

Terrible situation. People have to make the best choices they can possibly make. No judgement from others that have never been in these situations.

How sad. That child is alive and might live a very long time. He has the right to live or die when his time comes. It is sad that one could even consider taking away food to let them starve, what a painful torturous way to go.

I think that life is a gift from God. To remove the feeding tube is, in my opinion, to starve the child to death, evidently(I assume since he has one that he cannot eat otherwise). I do not however, have an issue with a DNR order (Do Not Resuscitate). That is not the same thing. In one case, you are providing food or withholding food from a living person. In the other, you are taking extraordinary measures to bring a life back that is not currently breathing/heart beating. (At least that is my understanding).

I know nothing about how your nephew might be a benefit to research (if I understood what you said correctly there), but I know that life is a gift and a blessing. We don't really NEED to KNOW the reasons he is still surviving. He is. That is enough. If you really feel like you must have "A" reason, then perhaps focus on the love that he evokes from those around him. Not what he does or experiences, but what he brings out in others....

You may recall the Terry Schiavo case from not so many years ago... Very hotly debated.

I think you should be a shoulder for support for these people. You are not the child's parent and you are judging them for their decision. Unless you are walking in their shoes, I say keep your thoughts to yourself and pray to God you won't have to make a decision like this.

It's a tough call but I would allow my son to die peacefully.

The baby didn't die. What a great sign that he was meant to live! I believe we should do all we can to support life from birth to "natural" death. Especially in this technological age where we have the ability to save lives and improve quality of life. Starvation is not natural death and is cruel.

I agree with you. Starving someone to death is very cruel. If a person can live unless they are starved to death, they should be allowed to live. I agree that a DNR would be a different situation. I can understand not taking extraordinary measures, but there is nothing extraordinary about feeding someone.

I believe that although it is tough, A baby or a child or a grown adult are alive because God has a reason for it. If we don't do what we can to care for those who are alive, are we not playing God? Just my opinion. Good Luck, I know how hard it can be when family disagrees with you on such a large scale.

Does the baby have a brainstem? If that part is not developed then there is no suffering because it doesn't know a thing. I'm not really clear on your statement about "research findings" Do you want the child to be used for that purpose? I will not waste my words because I don't have anything to say about this situation that would hold water with you.
And for all that say starvation is cruelty and wrong....what in the heck do you think Hospice does at some point?

starving to death is a horrible way to die.

God gave this world a beautiful gift, this child. It is not for any man to decide whether he lives or dies, but only Him, our Heavenly Father. I will say an extra prayer for this child and for those who love him, and also for those who apparently do NOT love him, as they need it most of all! Best of luck to all of you and please give that child all the love you can!

God gives life and God takes life away. We are not meant to take life away. If your question is whether or not the child should have the feeding tube taken out - then my answer would be no. I look to the example of Pope John Paul II for my answer - he had a feeding tube in at the end of his life. He was a great example of how to live life believing in both modern medicine and God.

You should support the baby's grandparents as much as possible. Bring them meals, help with housekeeping or other chores and provide respite care if you are able to do so. Talk to the baby, describe the world to him, read to him, sing to him, touch him gently, give him hugs and kisses. Show him love. Pray for the whole family, even the parents.

God bless you. C.

M.,
I'm w/you on this! And will be praying for this boy! Good thing he has an aunt/cousin that loves him & is speaking out for him. When God wants to take him, he will....since he's breathing on his own the body is still working. The food is secondairy. Breathing on our own is the biggest part of it. My thoughts & prayers are w/you. God bless you...J. j.

This is what I believe. We have a mind, will, and emotions. We have a body, a BRAIN, and we have a spirit. In a regular life we live with our mind and body that's closely tied in with our emotions. But our memories surpass our normal brain and become part of our spirit.

Now I believe that even though this child's body has been destroyed by the evil one, his spirit can not be destroyed. I believe that the care that this child receives and every word spoken around this child is being seen and heard by the child's eternal spirit. So whatever happens is playing out right there for the spirit that this child was meant to be and this spirit will live on when physical death happens. THEN, the spirit will take the only memories he has to heaven with him. He will go to heaven because he has not had the opportunity in this life to choose God. That means God has already chosen him.

This life is not much for this child. Maybe it would be better to let him go on to be with the Lord and to really live. BUT, whatever conversations are had about this should NOT happen in the same house with this child. There's a good chance this child's spirit is free to roam and can be anywhere. So I believe he should have hugs and kisses and stories and I love you's and that it should be expected and believed that he hears and feels it all.