Here's What I Want People To Know About Organ Donation

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After My Son Died, We Donated His Organs. Here’s What I Want People To Know.

Sarah Deddens

Trigger warning: child loss

I don’t know you but I’m grieving you
I never held you, but I made your heart
I don’t know a thing about your life, but you changed mine.

While my son languished on life support, I sat in a cold room surrounded by people I loved. Marathons of “Deadliest Catch” played on television all day and my father couldn’t resist making halibut jokes. They weren’t funny, but we laughed in spite of ourselves because we were desperate for purpose.

A doctor came in to explain the concept of brain death to me. I was in my own thoughts as jargon flew around me. I pretended to listen, but I realized nothing he said mattered. This was another day at the office for him; he was following protocol while my world was falling apart. He offered options but ensured they would all inevitability end with my son’s last breath. It felt like being read the dinner specials in a burning restaurant. I signed some paperwork acknowledging that he had explained the end of the world sufficiently.

I was staring at the weathered laminate of the conference table when my next visitor sat down across from me. She was short with dark hair curly hair and bronzed complexion. After days of medical professionals assaulting me with words of terror and doom, I braced for impact. She only stared at me. Had she asked me a question? What was it? She looked sad, so I asked her if she was okay. This surprised her, but she took it as an invitation to move closer.

“I’m so sorry for what you are going through, and I cannot imagine your pain.”

It was fair for her to say this. She was the first person to verbalize the unimaginability of my situation. She was a friend. She assured me I would have time to consider all my options, but she wanted to talk to me about the potential of donating Taylor’s organs. Taylor. She called my baby by his name. Not “him” or “the patient;” he was still a person to her. We were now best friends. She explained the process and the benefits of donation; it was all so overwhelming. For those wondering what the pros and cons are, here’s a helpful table.

FairytalesandCalamities.com

In all my disbelief and denial, I heard her say something about “parents in your situation.”

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I wasn’t alone.

There were parents and grandparents and brothers and sisters all over the world living in this hell; some had more hope than others. It made me sick to think that someone out there would find my son’s death a blessing. Someone was praying for my child to die so theirs might live. I thought I was angry, but I realized it wasn’t anger at all. I was jealous — jealous of their hope and jealous of their lives. Wouldn’t I have prayed for the same thing? The terrible truth is, I would have traded in 100 children for my son to live. This was it. Taylor was the answer to a prayer I prayed for someone else. I was the answer and my signature was a ladder for someone else to climb out of this pit.

“Yes. I want to do it. All of it. Let’s donate!”

I had been too excited and unreasonably loud. I meant to be cooler, but this is a recurring theme in my life. She sensed the danger in my over-excitement, and told me to think about it and discuss it with my family. The thought settled in that this would be one of the last decisions I’d ever make as his mother. I wouldn’t choose his preschool or make his lunches. I’d never pick out his outfits and I’d never wrap another birthday or Christmas present addressed to him. I was going to choose this, and no one would stop me.

July 25, 2008 doctors flew from all over the country to Miami Children’s Hospital to see Taylor.

At 4 p.m., they prayed together before removing the organs I spent 9 months growing inside me. I was at the funeral home while this happened. I wasn’t allowed to be present for the surgery and I didn’t want to be in that horrible place when my son left this earth. This place wasn’t better. It smelled like old leather and Febreze. I was looking at the children’s caskets thinking how fucked up it was that no one warned me of the potential for children to die. These people knew. They had options for children’s caskets; why hadn’t they warned me?

Four years later, I was pregnant and terrified.

I didn’t know what to expect because 100% of my children had not lived past the age of two. My worst pregnancy symptoms were heartburn, indescribable grief, and Taylor Swift playlists. Tums and headphones helped most of this, but I couldn’t shake my fear and absolute dread. I couldn’t remember the last time I felt hopeful and then I thought of my baby’s last day. He saved someone, or perhaps multiple someones. I never had the courage to follow up. Now I was listening to Taylor Swift’s Red album, drinking pickle juice, and emailing my case worker with every question I’d been afraid to ask. I waited two weeks for a reply that made my heart feel like a Lisa Frank Trapper Keeper.

“At this time, all recipients are alive and well.”

His kidneys. His liver, intestines and pancreas (they all went to the same place), and his heart. The heart beat I knew so well. I heard that heart beat inside me and I felt it against mine sometimes while he slept. I watched that heart beat rhythmically on a monitor in Miami as he left this world. My Taylor’s heart was still beating! Was it happy? Did it still respond to the ocean and the sound of its new mother’s voice? I had so many questions.

“You could send the donor families a letter if you’d like.”

That was how she ended the email. All casual, she offered contact with the vessels who carried pieces of my son.

I wish I had written then.

I wish I could tell you I exchanged letters before meeting my recipients and hearing my son’s heart beat one more time. I never wrote; I couldn’t. I was scared to know and scared not to know. I’m ashamed to say the idea of becoming attached to another sick child left me nauseous. I appreciated the email, and the news that these individuals were okay gave me the relief I was searching for.

I set out to write a post about organ donation and how its impacted my journey through grief. I realized my journey was still open-ended and my failure to follow up with the recipient families left things kind of weak. In the interest of journalistic integrity, I wrote another email. My new case worker responded so quickly that I hadn’t had time to prepare myself for the preview on my phone screen.

“I am saddened to share that Taylor’s heart recipient…”  

I didn’t expect to fall but I did. I opened the email while I sat in a puddle on the kitchen floor. The other two recipients were alive and well, but Taylor’s heart recipient had died “at the close of 2012,” as she described it. Taylor’s heart failed around the time I brought his brother into this world. It was poetic in a really tragic way. I’m honestly broken over the loss of Taylor’s heart recipient. Because this happened five years ago, my case worker cannot contact the family. I regret not knowing and I regret not writing. I wish I could have been there for that family and walked them through their grief. I wish I could have shared the experience of losing that heart the first time but mostly I wish I could have grieved with them instead of five years later all alone on my kitchen floor.

I wrote the other recipients.

I don’t know if they will respond, and if they do, I have no expectation of what they might say. I still intend to find the family of Taylor’s heart recipient without the formality of the organ donation agency. I want to thank them for taking care of something so precious to me and I want to hug them and cry with them and tell them “me too,” until we can’t cry anymore. I’ve been crying alone all week. I’ve only shared this news with two other people because I can’t say it out loud without breaking into a million pieces of inconsolable mush.

What people need to know about organ donation:

I’ve been told my decision to donate Taylor’s organs was one of bravery. For me, this decision was my salvation. I didn’t know the facts about organ donation when the possibility was mentioned, but I did know I had the potential to turn my loss into something positive, something meaningful. Every 10 minutes, another person is added to the national transplant waiting list. The U.S. Department of Health and Human Services reports there are 114,000 people waiting for organs. Donating Taylor’s organs didn’t lessen the pain in my heart, but it did lessen the pain in world.

If you are not an organ donor, consider it. Sometimes the greatest loss can leave an even greater legacy.