Daniel's parents knew he would be disabled before he was born: CHARGE syndrome is detectable before birth. They chose not to terminate the pregnancy
-which means he spent the first five months of his life in the Neonatal Intensive Care Unit. He's had eleven operations and has maintained a mostly cheerful attitude the whole time. He was born with a mess of "pre-existing conditions" including half formed semicircular canals in his ears (causes both deafness and lack of internal balance), breathing difficulties that necessitated a trach along with oxygen at night and various inhalent treatments morning and night.
I have a very difficult time coming to grips with this.
His parents knew. Did they research the syndrome after getting the diagnosis? Did they stop to think about the costs involved? And then decided to go ahead with the pregnancy?
And now they want the insurance companies to pay for their decision. They want their child to be fully covered for his treatment, no matter how many operations, no matter how many specialists it takes. And everyone else is expected to pay for it. Because that's what it ends up as: higher premiums for everyone to pay for lifelong treatment for a few. I can't help but weigh the costs and the benefits. And think to myself: a million dollars and more of treatment for this one child: could buy how many meals for hundreds of others? Could provide free vaccines, free checkups for how many children? Free dental care, free cleft lip surgery.
I don't think I'm a monster, though I'm sure some would call me that for daring to put a price on a child's life. I just think that someone needs to keep asking: how can we pay for this? And can we afford the same level of care for everyone.