The politics of life and parent's struggle to keep it going

John Kass:
But the other evening at home, one of our sons mentioned the baby in Liverpool, England.

“What baby?” Betty said sharply.

Baby Alfie.

As she was filled in on the details, she looked across the table at me, into my eyes, then through them to some other place.

We’d known that place years ago. It is a room with beeping monitors, tubes and a rocking chair. Nurses would walk through in their soft quiet shoes.

I knew she was there in that room, on the edge of what could have been the beginning of a vastly different life for us.

Perhaps you’ve tried avoiding the Baby Alfie story as we did.

The 23-month-old boy was diagnosed with a rare brain disorder. Doctors of England’s National Health Service said they could do nothing and recommended removing life support.

Italy had offered to take Alfie into one of its hospitals and try to keep him alive. But English justice rejected the kind Italian offer.

English judges ruled they knew best, and so they decided, in the best interest of the child, that justice would have the child die.

The parents, who wanted to take the boy to Italy, had no rights in the matter.

If Alfie’s parents had been royals, there would have been a different outcome. But they’re not royals.

So Alfie’s parents had their rights removed in a nation that once gave the world the Magna Carta, and the miracle of English common law.
And though our family was at dinner at our kitchen table in a Chicago suburb, talking about national health care and what it may mean for us when judges decide to euthanize the sick and infirm for the greater good, Betty wasn’t there with us. Not really.

She was in a different place. And I knew exactly where.

It was a very difficult birth and we almost lost both the boys and Betty.

But with God’s help, her great obstetrician, Dr. Ron Lorenzini, with the big hands of a bricklayer, saved them all.

One twin was breech. Betty began hemorrhaging. But the doctor had saved the babies and he saved her.

More trouble came later. One of the twins wouldn’t eat. He couldn’t keep anything down and the weight just fell off him. The doctors in the NICU said we were losing the boy.

They came up with a Hail Mary play called “kangaroo care”: Mom sits in a rocking chair, holding the baby to her breast, skin on skin, in the hopes of stimulating his organs so he’d eat.

But Betty was receiving more emergency blood transfusions. She couldn’t rock him.

So they put me in that rocking chair. I held my son against my skin. They covered us with blankets. I rocked us. The nurses whisked in and out. The sky grew dark, then pink at the edges, then gray, and dark again. I rocked him for more than 24 hours straight, with my brother Peter coming in to give me a break every 12 hours.

What did I talk about with my son on my skin, alone in that room?

What life would be like, what he’d do, how he’d run. I promised and begged him and begged God. I bargained and prayed.

The next day the boy sipped a thimbleful and kept it down. They told Betty he’d live. She opened her arms for him. She looked into my eyes, then through them, smiling.

I don’t know what some judges think when using abstractions of the law to reject another nation’s offer of life while sentencing a child to death.

But I do know what some parents think, in those rooms with monitors and tubes, and nurses walking in soft shoes.
Read the whole thing.  It shows what parents are willing to do to cling to the life of a child and why no judge should ever take that hope away.  There is something cruel and ugly taking place in the UK with its rationed healthcare system that denies care to those who need it most.


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