Kaylee Wallace, 2 months old, has Joubert syndrome, which is a congenital brain malformation.
Kaylee's parents met the parents of a sick child, baby Lillian, who is on the list for a heart transplant because she has truncus arteriosus. Having been told there was no hope for Kaylee, Kaylee's parents decided to withdraw her vent support so Lillian could have her heart.
But Kaylee only needs breathing support when she's asleep and to everyone's disappointment, she stayed awake during the one-hour window in the operating room and the surgery was called off, [her father, Jason] Wallace said. .... Wallace said he'd fight to give the surgery another chance and hopefully Kaylee would fall asleep on the second try so the transplant could go ahead.
This is where organ transplantation has taken us -- the the point where a loving father's first reaction on hearing that his child wasn't so sick after all was to be crushed with disappointment.
Is this really a road we want to travel?
Prayers for both these children -- that a better alternative can be found for baby Lillian -- such as surgically correcting the heart defect, and that the doctors who gave Kaylee such a grim prognosis that she was fit for nothing but spare parts will be proved wrong. And let's pray that we turn away from this transplant culture, where we're putting patients and their families onto a ghoulish waiting list where they're disappointed when a child doesn't die.
Read this excellent blog post from Not Dead Yet.