Quality of Life Issues: Life on a Ventilator does not mean a painful or poorer quality of life.

Quality of Life Issues: Choosing Life on a Ventilator, Is it Selfish? Is It Giving Others False-Hope? What do you think?

(First I acknowledge every case is different and the choices are tough- I want to pass no judgment on peoples choices. I do believe , however, people are not always given all the true facts and make decisions without complete knowledge.)

I received this comment on my blog-
The commenter accused Samuel's parents of being selfish and giving others false hope.

Anonymous said...
I simply have to ask. How is this choosing life? My son also had TD. My husband and I chose to do the best, unselfish, and humane thing in the world which was let him go. Why put your son through such a horrible life to satisfy your need to parent? Yes, I completely understand what it is like to have to go through what you went through; however, your giving people false hope. These children have no quality of life and never will even if they survive past the 48 hour mark. They will never smell a rose, play in the leaves, or feel the warm sun on their little faces. They will only ever know a machine breathing for them, the pain of several needle sticks and procedures just to sustain a heart beat. And for what? Answer that for me, what?

November 24, 2009 11:51 PM

Dear anonymous I truly feel for your loss. I can never know what is is like to make those decisions you and my sister-in-law faced. No one can fault you for the decisions you made out of love, caring, and compassion. I am in no position to tell anyone that their personal decision was right or wrong. It was best for them at the time. My original response was a gut reaction to your comment on my blog. After re-reading my response, I thought maybe the tone might have come across as harsh or judgmental, which was not my intent at all. My quarrel is only with the medical establishment and others that want to say what quality of life is worth living. I want to let others know that life on a ventilator is not a bad or painful way to live. We have come so far from the iron lungs of the past. Please accept my sincere apology if my original response came across as unloving, or uncaring or judgmental in any way. That was not my intent. Sincerely Deana

My Original Response back to the above poster:

Anonymous first off I am not the mother-- I am the Aunt. Second you are so mistaken on everything you just postulated. Samuel has a wonderful quality of life- Did you not look at the pictures? He laughs, he smiles, he plays, he has favorite toys he loves to look at himself in the mirror, he interacts. He even has a teacher who comes and works with him and he can push buttons and operate a computer. He has been to Disney World, and Sea World and to the beach, He has felt the sun and the breeze on his face, tasted the wonderful taste of all kinds of food including candy, and smelled the roses. My sister-in-law and brother-in-law take him for walks (the ventilator is portable) They take him to church regularly. They take him over to family and friends houses. You were told that these children would have a poor and painful quality of life but that is not the case. You were lied to. My sister-in-law chose to have him ventilated so he could survive. if God want's to take him home he can certainly do so on the ventilator. And miracle of miracles he has been off the ventilator for up to 4 hours (but it might have only been 2- I am not sure I don't remember what my SIL told me) So who knows. No-one has allowed these children to live long enough to actually know what their potential is. My sister-in-law was told he would not do almost all the things he is doing. And for what you ask?- For life the simple joy of life and for hope. Maybe his life is meant to give others hope. You sound like you were given no hope for your little one and made decisions accordingly. Samuel is 4 years old now who knows how long he will continue to live and thrive .

Here are the links to the many blog posts I have done on my nephew Samuel with many pictures and a video that show his quality of life.
(In order from most recent at the top to oldest post at the bottom)

Chose Life Story, Samuel living with Thanatophoric Dysplasia

Update: On Miracle Baby Samuel Born With Thanatophoric Dysplasia, Turns 4 years old!

Samuel's Belly Laugh (you tube video)

Update: Sam a Surviving 3 1/2 year old Thanatophoric Dwarf has Fun at Sea World & Disney

Update: On Miracle Baby Samuel Born With Thanatophoric Dysplasia, Turns 3 years old!

Love, Hope and Miracles; Miracle Baby