When we found out Paul needed open heart surgery, there was no question that we would do it. There was fear, there was great fear about what it would mean, whether he would survive, but there was no question that we had to try.
Paul's Down Syndrome was irrelevant to the question. He needed his heart repaired to live, ergo his heart would be repaired. Paul's age was irrelevant to the question. Thankfully no one ever suggested that he shouldn't receive the heart surgery because of his Trisomy 21. I might have developed mutant powers in that moment of pure rage and Catholic Hulk smashed the offending speaker into a wall.
Moms are dangerous when their babies are threatened.
So when I read about little Amelia and the callous response of the doctor who said,
“I will take this back to the team. We meet once a month. I will tell them I do not recommend Amelia for a transplant because she is mentally retarded and we will vote.”
I see RED.
And when the mother then asks “And then who do I see?”
and the doctor responds:
“Well, you can then take it the ethics committee but as a team we have the final say. Feel free to go somewhere else. But it won’t be done here.”
I GET MAD.
This cannot stand.
Refusing to treat a child and telling the parents they are too involved with their DAUGHTER, refusing to perform the surgery even if the parents find a donor on their own, it is the very response of Scrooge: "let them die...and decrease the surplus population." It is wrong. It is the pernicious "quality of life" argument that weighs a child's potential economic value to determine worth.
Now I'm sure the doctor did not consider himself anything of the villain, only the bearer of hard news. He even points out, "This is hard for me." echoing Pilate's, "I wash my hands."
Forgive me for not feeling terribly sympathetic, but you can know it's no where near as hard for the physician as it will be for the parents or the patient who must endure this sentence should it be carried out.
Here, on the week before the March for Life, I ask all of you to pray. Pray for the Doctor to have a softening of his heart. Pray for the family to find a donor and if not this hospital, another one willing to take Amelia's case on and help her live. Pray for a miracle for this child because Heaven hears all our prayers.
Some people use the existence of children like Paul and Amelia as proof that there is no loving God, because suffering, unreasonable suffering exists. Some argue that children like this are better off dead. None of Paul's siblings or family think this is true. None of Amelia's family is willing to let her go quietly into that good night with a "it's for the best" attitude. Only those not emotionally attached to these individuals can make that statement, because they think they lose nothing by the absence of people like Paul or Amelia. They have no idea how much these children add to life, and how much their absence in our families would subtract.
All people have souls and we are responsible for everyone's souls if we would love as Christ loves, we must love the souls that the world declares are unfit, unworthy of life. These little ones are Christ in disguise. Children such as these are here to show us how to love without limits, to love beyond reason, to love and will the good of the other when there is no apparent cost-benefit to us. Little ones like this are greater proof of God than sophisticated educated physicians and social workers who refuse the tears and pleadings of parents desperate to save their daughter. Evil, by omission or commission, via neglect, indifference or pure rational calculations about what is optimal scientifically, is harder to comprehend in the world of a loving God, than the existence of suffering. Pray to break the hearts of stone, pray God gives us all hearts for love alone.
Finally, I ask that you go to the website and share her story, because every child is precious in the eyes of Heaven, and in the eyes of the parents, and all of them deserve better, so much better than this.
P.S. Just received word that the family has been INVITED BACK. Keep praying.
http://yourlife.usatoday.com/parenting-family/special-needs/story/2012-01-16/Team-Amelia-backs-transplant-for-special-needs-child/52603482/1
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5 comments:
My heart and my prayers are with all who have to deal with hearts of stone.
Tread lightly. CHOP is one of the best hospitals for children in the United States. Reporting hearsay and demonizing the doctor without knowing who this person is and without knowing all the facts of the child's condition makes for a weak, emotional argument. Parents of special needs children need to move from a defensive posture and remind themselves that they are fortunate to live in a country that has set the international standard for early intervention, treatment, and support of children of all abilities ... and I write this as a parent of a child with extraordinary needs.
I went and did the research on CHOP. I acknowledge they do good and even GREAT work.
But if the doctor said this, he was either willfully ignoring the hospital policy with his actions and words, or was ignorant of the policy and thus acting inappropriately based on CHOP's policy regarding transplants.
The social worker also was either acting with intent to dismiss, or out of ignorance of the policy. If ignorance, how many other children have been dismissed because the policy was not well known. And how many have died for that ignorance?
If intentionally, how many other children have been given a death sentence by the wilful actions of some. And why? If intentionally, then the Hospital should be faulted for not enforcing it's policies regarding transplants and children with disabilities with its staff.
We are responsible for what we do and do not do.
"If" is the biggest two letter word in the English language.
Gospel Mk 3:1-6
Jesus entered the synagogue.
There was a man there who had a withered hand.
They watched Jesus closely
to see if he would cure him on the sabbath
so that they might accuse him.
He said to the man with the withered hand,
"Come up here before us."
Then he said to the Pharisees,
"Is it lawful to do good on the sabbath rather than to do evil,
to save life rather than to destroy it?"
But they remained silent.
Looking around at them with anger
and grieved at their hardness of heart,
Jesus said to the man, "Stretch out your hand."
He stretched it out and his hand was restored.
The Pharisees went out and immediately took counsel
with the Herodians against him to put him to death.
As good as kids with disabilities have it in this country, in this case, the bar needed to be set a bit higher --for Amelia's sake, if nothing else.
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