The Other Side of Organ Donation

My Dad with Thomas shortly after his birth in May 2008

Today I am seeing all over the web headlines about how Facebook has created a new tool for organ donation. ABC says Diane Sawyer has an exclusive interview with the woman at Facebook who came up with "a new idea; find out what it is" (she's a little behind the 8-ball since it's already all over the internet, but I digress). In every media report and television show plot line that I have ever seen dealing with organ donation, the focus is on the recipient and the sorrow of the other family is washed over a great deal. The assumption is that the grieving family will feel a whole lot better after their loved one's organs are donated, so the program focuses its attention on making them agree with a sob story about the person across the hospital wing who needs a new heart, and then leaves after effects of such a decision to the imagination. And what we are to imagine, I suspect, is that the family, though still sad, relieves a lot of its grief in the act of giving the organs away. It makes them feel better. That's what we're supposed to believe, anyway.

As commendable as using something like Facebook to help others is, as commendable as organ donation can be, I think it's wrong that no one really looks at the other side: the families of those who donate the organs. It was not something I had thought much about until I lost my Dad three years ago. And this may not be a popular thing to say, but organ donation is not a cut and dry easy thing which stems the grief of the family members.

This was taken in Austin about one month before my Dad died. They were visiting for Christmas.

A little over three years ago, while we were living in Austin, my Dad suffered a massive heart attack in January of 2009. My parents lived north of Chicago at the time. At first, my mom was in such shock that she told us not to come. They were working on him hard, putting in a stent, so it seemed like things were going to be okay. Thank goodness my brother Adam had the good sense not to trust mom's shock in those moments. He called us just a couple of hours later as he was on the road to Chicago himself. "Are you on a plane?" "No," I replied, "Mom said not to do anything yet." "Get on a plane, Liz." That was pretty much all he said. We raced home from my doctor's appointment, shoved what clean clothes we had into suitcases, and frantically called airlines.

That was Friday. We arrived in Milwaukee at about midnight on Friday night, or what was really now Saturday. A friend of Adam's picked us up and rushed us to my parents' house. The next morning, when I entered the hospital, the very first thing they said to me was, "look, we think your Dad is brain dead and here is why." They started poking and prodding, showing me his non-response, opening his eyelids and shining light. "See, no response." It was completely insensitive and awful. I had only just arrived. I had not even had the chance to BEGIN to come to grips with the fact that my father was laying there in the ICU unconscious, not looking a bit like himself. My husband wasn't even with me at the hospital yet because our son was still back at the house sleeping (he was just about 10 months old, the only grandchild). They hadn't even had a chance to see my dad yet, either. I couldn't understand why they would insist on doing that first thing when I arrived. I couldn't understand why they wouldn't just give me a few minutes alone with him before they started bombarding me with all the "proof" that he was brain dead.

Do you know why? They wanted his organs. They wanted them now. And the neurosurgeon wouldn't be around until later to legally declare him brain dead. My mom wouldn't do anything until all three of us kids arrived. They wanted to cram it into our heads so that we would quickly decide to release him for organ donation.

I'm sorry. It's true.

You see, my Dad was an organ donor. It was on his driver's license. In the state of Illinois, prior to a declaration of brain dead from a neuro specialist, the family has to okay organ donation. After the neurosurgeon declares the person legally brain dead, the family has no more say. By law, the doctors call in the transplant people and they start their tests. They didn't want to wait for the neurosurgeon, you see. They wanted to take his organs sooner. And they did not care one shred for how we felt.

We refused to make any decisions without the neurosurgeon's consultation. That made them angry. At one point, while we were all in the ICU lounge, my mother took our male neighbor and close friend in to see my Dad. This neighbor and my Dad had been close friends. They were in there talking when the doctor came into the room. He asked my mother again about organ donation. My mother said she would not consent until her children were ready. The doctor eyed our neighbor suspiciously and then asked, "Whose children are they?!" I think he was trying to find out if we were actually my Dad's step-children or if my mom was a second wife. She looked at him and said, "They are our children. Mine and the man in the bed's." She left the room and cried in my arms in the hallway. It was the first time she had cried. When we related what had happened to my husband and my two brothers, they went together to the doctor's office and basically told him to back off and leave my mother alone. After that he was all simpering politeness.

Once the neurosurgeon finally arrived and declared my father brain dead, we no longer had any choices or say in the matter. The transplant people came in and started their work. They took blood samples and tissue samples. They poked and prodded. They pushed and pulled. They, as my mother tearfully said to me later, "stole his dignity." Then they cajoled and talked with us. They told us how wonderful it was. The process was explained and the organs that they were going to take were discussed. They explained that they would take him when they were ready and that the ventilators would be turned off in the pre-op room. We had no say in when this would happen.

I asked them only this question: "Will you take his eyes?"

"Yes. Someone who is blind can use the corneas and will be able to see someday."

"Please," I said, "please don't take his eyes."

"We can't do that. We have to take everything. It's the process. This is how it works."

You see, to me, the eyes were what made my Dad my Dad. To take them was to take him in a very tangible way. And I could not stand that.

To be fair, I should say that my brothers do not feel completely the same way about this as I do. We all grieve differently and the impact of things like this is different for each person. For one of my brothers, especially, I think this was a source of comfort. To know that my Dad was doing one last great thing. You see, it was completely natural that my Dad would sign that organ donation card. He was generous to a fault. He was blustering, and loud, and angry and not always easy to live with. But he would die for you. He would give you his last dime. He would give you "the shirt off his back" as they say. So in a way, organ donation was natural for my Dad. But that did not necessarily make it easier for all of those who grieved him. It did not lessen our grief. And it should not be the source of our hope, as it is so often made out to be.

Our hope is not in organ donation and feeling that our family member did such a great and wonderful thing. Our hope is not in knowing that someone else will live a better or longer life because of it. Sure, those things are true. Sure, organ donation is good in that respect. But our hope is in somethng much greater: It is in the resurrection on the Last Day. My father is Baptized. And he will live, and in his flesh he will see God with his own eyes (Job 19). Perhaps that is what gave me the most pause with organ donation, especially my Father's eyes. You see, he'll need them again on that Last, great day. I know the Lord can and will restore him despite organ donation.

I'm not saying don't be an organ donor. I'm not saying organ donation is inherently bad or that every experience will be as terrible as mine. What I am saying is, let's be honest about it. Let's be honest about how hard it really is. Let's be honest about the fact that even all these years later, I feel, at best, ambivalent about it, and that's how others might feel, as well. Let's be honest. And, let's not place hope in an organ donation or the act of organ donation, but in the Lord and the promises He has given. His promises are to wipe every tear from our eyes; to carry our sorrows; to give us His body and blood for forgiveness, life, salvation, and yes, healing; and to resurrect us on the Last Day.

Just this year, my mother sent us all a copy of a letter she later received. It was from one of the recipients of my father's organs. This person was so very grateful, and it sounded as if this person's life would very much improve. What did this person receive? What else? His corneas.

With my Dad in December 2007 at a little diaper shower arranged by my mom.