Spotlight On: Donation- What Am I, Chopped Liver?

Every month, we here at The Band choose to highlight a specific word or condition that we want to throw into the spotlight and talk about. For April, we’ve chosen to spotlight the word - and the act - “donation.”

What do you donate? Are you a transplant parent? Do you have a transplant story for us? Have you donated blood, organ, or tissues? What about time? Or items for charity?

We want to know what you’ve donated in your life.

It’s time to band back together for donation!

(Be sure to tune in on April 22 for our Donation Carnival of posts!)

What am I, chopped liver?

Yes, actually, I am.

7 years ago, I had a choice. I could continue to watch my 17-month old baby girl die, or I could give her part of my liver. Not much of a choice, really.

“Sure Doc, put me under, cut me open, break a rib or two, and give my kiddo part of my liver. I’ve had a good 27.5 years on this planet.” That’s kind of where my head was - I was ready to die for her.

My husband wasn’t a match for organ donation. His blood type was all wrong. It crushed him. Iknow that he wanted to be the one to donate his liver for her. He wanted to spare me the agony, the pain I would face. He’s always been the knight-in-shining armor type.

My brother wasn’t a match, either. He was only 18, but he, too, wanted to be the one to save her. He wanted to so badly, but the transplant doctors found an arterial anomaly or some such thing. My sisters both wanted to donate, too, but Andrea* had just had a baby and Michelle was in Iraq.

And then there was one.

Me.

Even at her sickest, my daughter only scored a PELD (or, Pediatric End-Stage Liver Disease score, which scores the severity of pediatric liver disease.) of 11.

Transplant scoring is a complicated, complex process designed to ensure fairness among organ donation, but it still sucks.

There she was, her PELD of 11, over 86,000 people waiting for a transplant. (Today, there are 113,620 very sick people waiting for a donor.) Some wait for a kidney, others lungs, or a heart.All wait for life.

They are all waiting for their life.

Before my daughter needed a new liver, the only person that I’d known that needed an organ transplant was Walter Payton, beloved Running Back of the Chicago Bears.

I cried the day he died.

He spent his final months as a transplant advocate. And that was about as much as I knew about organ transplants.

Before my daughter was born, I thought the only people that needed a new liver drank their other one away. I came from a long line of alcoholics - it’s what I knew.

And I was wrong.

Our daughter was born with Biliary Atresia. No one knows what causes it. No one is sure why, for some babies, the biliary tracts in their livers spontaneously (usually at birth) shrivel up and quit.  

I tried to get pregnant for three years, so during my pregnancy I didn’t drink alcohol or pop, I ate right, I didn’t smoke. I did all the “right” things, and yet she still needed a new liver. I was seriously pissed for a very long time.

What was the transplant like?

My husband had it the worst. He darted back and forth between the two hospitals, worried about his beloved girls.

My pain was incredible - I’ve never experienced anything like it. I can’t tolerate pain medication, and I released myself after 48 hours in the hospital. I imagine if I’d taken pain medication, the pain would have been more manageable, but I was concentrating on my child’s care.

My daughter had her share of complications after the transplant, but seven years later you wouldn’t know it. You’d not guess that her face is the face of a child that was once given a week to live. You’d never guess she’d been placed at “Status 1” (transplant speak for less than a week to live).

So why did I donate? There is a serious deficiency of Organ Donors  in the world. It’s hard for people to give up the organs of their loved ones.

I get that.  

I understand the fight; the desire to save the life of a loved one. I don’t know the pain of losing one - it’s a pain I refuse to imagine. That’s why I would donate again - in a heartbeat. 

*Names changed to protect privacy.