Strange, the things we remember.
I can’t remember his name, 12 years later. But I can picture the huge brown eyes, the red hair that fell across into them, still waiting for its first haircut. He was about a year old, round-faced and robust looking if you could ignore the IV tubes and the oxygen cannula. His mother – young, unmarried, overwhelmed. I can’t picture her any more either. Forgive me. We had our own details to remember.
His glassed-in room in the Pediatric Intensive Care Unit was across the nurses’ station from our daughter’s. Heart patient, of course; that’s what the wing was for. A miserable fraternity we’d never asked to join. But we were going through initiation nonetheless. Psychological warfare in the waiting room, hazing by sleep deprivation and terror.
His mother and I would talk during the shift changes at 7 and 7, when doctors made rounds and we had to leave lest we overhear another child’s health details. As if we didn’t know them already. Bonds forge fast in a PICU waiting room.
So we learned them all, the defects that brought our children there. Tetralogy of Fallot, Ventricular Septal Defect, Transposition of the Great Arteries, Hypoplastic Left Heart Syndrome.
On the scale of “serious heart defects,” a ridiculous hierarchy, he had one of the easy ones: Ventricular Septal Defect, or a hole in the heart. One surgery, fix the hole, recover, go home. That’s how it’s supposed to happen.
I envied her, to be honest. Our daughter’s defect came with a lot of question marks. Secret meetings we couldn’t attend where doctors talked about treatment options and quality of life versus risk and gave her genetic tests to be sure she was worth the trouble. Of course, they didn’t say it like that.
They wrapped explanations in gentle blankets of ”we need a complete picture,” and “there could be complicating factors for long-term survival.” They whispered things like “palliative care.” Which sounds much kinder than “we could just keep her comfortable and let her die.”
And I understood those choices, I really did. But in the end, because our doctors wanted to save this blue-eyed girl, they chose the route that gave her the best chance.
I never wondered then if the fact that my husband and I were both educated members of the media, and our daughter had double-coverage private insurance played a role. Twelve years ago, I just thanked God for putting us in the right place, at the right time, with the right surgeon. I still do.
But this brown-eyed boy, and his young, single mother, had a different story. They had a managed care program with a reputation for stingy payout. So when the brown-eyed boy was born with a tiny hole in his heart, the insurance company said, “let’s wait it out.”
Sometimes, holes close on their own. That’s a lot cheaper. So they refused to approve surgery. And the young mother and the brown-eyed boy waited.
But the hole didn’t close. So finally, the insurance company relented, and scheduled surgery.
You remember, right? Ventricular Septal Defect, or a hole in the heart. One surgery, fix the hole, recover, go home. That’s how it’s supposed to happen.
The problem is, the brown-eyed boy’s heart had to work much harder because of that hole. Overworked hearts get enlarged. The muscle walls get thick, more rigid. Sometimes, they’re not ready to start beating again after open-heart surgery. And so it was for the brown-eyed boy’s heart. It couldn’t find a rhythm and wouldn’t beat on its own.
Surgeons fought back with bypass machines, and medication, and everything they could. We were at one of the best hospitals in the world for babies with heart defects, and the fight was valiant. Helpless spectators, the mother and I sat in the waiting room during shift change and talked and prayed and hoped together that her brown-eyed boy would open his eyes again.
Then one day, she didn’t come to the waiting room. The delay had proved deadly. He was gone, and so was she.
I think of that brown-eyed boy a lot these days, as the health care reform debate dissolves into so much silliness and death panel discussions and screaming at town hall meetings.
But what I wonder, is what made my blue-eyed girl more valuable than that brown-eyed boy?
While she practices for Shakespeare plays, texts her friends and fights with her brother, what would he be doing? Suiting up in pads and helmet for football practice, writing a book report, refusing to pick up his room?
I can’t buy the argument that just because we were born into families that valued education, blessed with bright minds through genetics, happened to have good insurance, our baby was worth more.
I hear the argument that quality health care is not a right, and I ask, “why can’t that change?” We used to say that about education. We used to say that about women voting. We used to say that slavery was an economic necessity that would bankrupt our country if we abolished it. We grew up. We made progress.
I’m not a politician or policy maker. But when I think of the brown-eyed boy, I wonder how many deadly delays it’s going to take.
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