Quality of Life Question?
Reaction to last week’s column – “The Right to Live” – brought about many comments, all heartfelt, poignant and worth recalling. The matter involved the life-and-death situation of the British baby suffering from irreversible birth defects.
Eleven-month-old Charlie Gard was born with a rare genetic condition called mitochondrial depletion syndrome. He’s blind and deaf. He’s on life support in a London hospital and his parents yesterday gave up in British courts to allow them to bring him to the United States for an experimental medical treatment.
I wrote: “Miracles do happen and with modern medical marvels, why not a chance for Charlie?”
Well, following are perspectives from longtime readers well worth considering today. I agreed to use her complete comments without identifying the writer but my editor knows.
The email is as follows:
“Harry, you don't know the suffering a special-needs child goes through.
“Handicapped babies and children are ‘cute.’ But then we become disabled adults, we are not "cute" anymore.
“I am disabled from birth so I can tell you from experience. And it doesn't get easier as you get older, either. It gets MUCH HARDER.
“I feel for the baby. But it is selfishness – not love – on the part of the parents to push for all this medical intervention. For what? The pain and the suffering that child would go through cannot be measured. It can only be felt by the child.
“A child does not understand. He just knows that the hospital makes him hurt. He sees a needle and he screams.
“As I understand it, the child is now blind and deaf. He has become a pincushion for IVs and tube feedings and such. Is that life? Is that quality of life?
“I have wished many, many times that when I was born there was not the medical intervention, as there was, and that my parents would have let me return to God – my Creator – and not subjected me to all the hellacious medical procedures.
“They should have kissed me on the forehead and said: "We love you, little one, go home to God!"
“But this did not happen and ultimately it was not for my benefit. It was for theirs. ‘Oh, we can't let the baby die. We have got to do what it takes.’ But, I'm the one who has lived a life of pain and suffering as a result – the surgeries, the needles, the hospitals...
“I am traumatized to this day – almost 70 years later – what I went through medically as a child.
“And I am still LIVING a life filled with pain and suffering. Constant pain! I lost my ability to walk three years ago.
“When pain is bad enough it reduces you to silence because you are doing everything you can to just deal with it and cope. You don't even have the strength to speak. That is why Christ was silent on the Cross. He was dealing with the Pain of the Crucifixion.
“I do understand Redemptive Suffering. Only that gives what I go through meaning and purpose. But I would much rather be with the Lord. I'm so tired of the constant daily pain. Years’ worth of pain.
“Nowadays children are surviving with intensive and invasive medicine – what you call ‘modern medical marvels’ – who wouldn't have survived years ago. Modern medicine is playing God.”
[Editor’s note]: Harry wrote:
“If there is the slightest chance for this baby, a human being, let's do it....
"If just one human being can be helped by modern medical technology, let's do it.
“No! No one is thinking of the child – really thinking of the child. Even if there is a ‘miracle,’ this child is going to remain blind and deaf with residual brain damage.
“As I see it, the parents are doing that child a disservice. Don't subject him to any more inflicted pain and suffering. He is too young to understand Redemptive Suffering and enter into it. Don't elongate his life under these circumstances and purposely inflict more pain and suffering on his young body through invasive and intrusive medical procedures. Don't make his dying harder. Let him naturally go home to God.
“He won't be lost to them. He'll be in heaven awaiting for them to join him.”
A friend, and reader, sent this comment:
“In 1954, 67 years ago, in Nashville (TN) on a very cold March, 2 A.M., we had a fire in our home. I was 15 years old with three sisters, Gena 13, Carolyn, 11 and Betty, 9. Gena was able to escape from the bedroom with some burns; I was able to get Carolyn out of a window, the fireman found Betty caught behind the door unrecognizable. We buried her covered from our Holy Trinity Church. Gena and Carolyn were in the Meharry Hospital. Gena was doing all right, but Carolyn was fighting for her life as I constantly fed her ice.
“After 3 weeks, Mama a widow, came to me saying: ‘Bobby, we have really prayed that Carolyn be saved – we see that she is suffering. We are being selfish; we want God to spare Carolyn for our sake. Let us now change our prayers and pray that God will act to do what is best for Carolyn. She died the next day and we returned to Holy Trinity, burying her, too, in a covered casket.
“Two years later Mama was at a bridge party at Holy Trinity, sponsored by the Episcopal Churchwomen. The play stopped and one of Mama's friends said: ‘Ella can we ask you a question?’ Mama replied ‘Yes.’ ‘Ella we are glad you are here – but we are really surprised that you did not go crazy after losing Betty and Carolyn. How did you not go crazy?’ Mama replied: ‘I have no time to go crazy. I have two children left to rear, Bobby and Gena; I have no time to go crazy.
“In the spirit of my departed mother – I seek to avoid people of selfishness – and have no time to go crazy.”—Bob.”