457 Days Ago 7 Year Old Sam Tragically Died From a Seizure

457 days ago, 7 year old Sam tragically died from a seizure. 

His parents donated his lungs to my 9 year old daughter, and it saved her life. 

Tomorrow Sam would have turned 9, so I’m donating my kidney to a stranger to honor his memory on his birthday. 

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The call from the hospital came at 10:07pm:

“Hey guys, we have a pair of lungs for Avery. Come to the hospital now.”

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This wasn’t just any call, this was THE call. The call that would save my daughter’s life. 

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The call that also meant that someone else had just tragically died unexpectedly. 

Avery wasn’t quite asleep yet. We were staying in a small short term rental near Houston that we’d moved into to be closer to the hospital. We couldn’t get on the transplant list unless we lived nearby.

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We slowly walked into her room together. “Avery, we got the call.”

She sat straight up in bed, a look of fear on her face.

“Really!?”

Yes. It’s time to go to the hospital.

She started to cry. “What about school? Will someone tell my teacher?”

“Yes dear, we’ll let the school know.” 

She never ended up going back to that school again.

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Fearful and excited, we left for the hospital. 

4 days earlier, 870 miles north of us in Lincoln, Nebraska, a 7 year old boy started having seizures. His name was Sam. He experienced bleeding in his brain and had emergency surgery to relieve the pressure.

The next day Sam’s parents learned that he would not survive this tragedy and they selflessly decided to donate his organs.

As we made the 40 minute drive down the Westpark Tollway to the hospital, Avery’s surgeon was flying to Lincoln to personally inspect Sam’s lungs. He would later hand deliver them back to Avery.

Once the surgeon arrived back we met with him briefly. He explained that the lungs looked perfect and that surgery would take quite a while.

I signed a document affirming that Avery had a 5% chance of dying on the operating room table. Her chance of dying without the operation was close to 100% within a year.

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It was a difficult document to sign, but we liked our chances.

Then the waiting game began.

I had been posting updates on Facebook to friends and family, but my privacy settings were not locked.

Suddenly, I got a DM from someone I didn’t know, with a link to a Facebook post about Sam passing away.

We might have broken every HIPAA violation in the book, but we now knew who Avery’s donor was.

There are only 4-5 lung transplants per year for kids in this age bracket. Her donor HAD to be Sam. 

Not only did I learn this the first day, but I learned this while Avery was still in surgery. This was not common, to say the least. Organ recipients usually never learn their donor’s identity.

While Avery was being operated on I spent the next hour or three looking at pictures of Sam. I was completely overcome with emotion.

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I felt immediate inexpressible love and gratitude for this child I’d never met. He was the same age as my 7 year old at the time, and seemed to have the same personality as my 5 year old.

I had never felt so much love, gratitude and sadness all at once. How can I repay you, Sam? How can I thank you?

As a Christian, I believe that Christ, a perfect man, died tragically so that I, an imperfect man, could live. I believe that to be true, but this experience with Sam made Christ’s Atonement much more personal. More tangible.

Sam was a perfect 7 year old boy. Surely he did not want to die. But his tragic death enabled my daughter’s life to continue. His selfless parents enabled my daughter’s life to continue. I was forever indebted.

I openly wept in the waiting room as I processed these emotions. Later, Avery safely made it out of surgery.

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Weeks later, we were back in our rental home. Avery’s surgery went amazingly and she was discharged 5 days early. The surgeon said her lungs were the best he’d ever seen. It’s been 15 months since that day and Avery is thriving.

Shortly after coming home, I was chatting with someone else on Facebook that was connected to Sam’s family in Nebraska. She had tipped off the woman that originally DMed me about Sam, and she was asking about how Avery was doing.

While chatting with her I noticed that she had previously posted about being a living donor. I had never heard those two words put together before. I learned that she had altruistically donated her kidney to a stranger.

The concept of doing that had an immediate and profound impact on me. I immediately knew that this was something I could do to carry on Sam’s memory and to thank his parents.

This spark of an idea sent me down a rabbit hole that ultimately ended with me on an operating table over a year later.

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Months later we found ourselves back in our home in Dallas. Life was returning back to normal, but I didn’t want to forget those feelings of gratitude I felt for Sam, and that nagging idea to donate my kidney.

I initially had the idea for emotional reasons, but I’m a logician at heart. I need to know the facts and risks. A purely emotional decision wasn’t going to get me all the way to the operating room.

I started doing research about kidney donation, and what I learned shocked me.

Every 90 minutes someone dies waiting for a kidney on the transplant list. Even more shocking? If only 1 in 10,000 healthy American adults chose to donate their kidney, that number would effectively go to zero.

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I’ll repeat that for emphasis:

No one would die on the kidney transplant list if 1 in 10,000 healthy American adults decided to donate a kidney.

Not 1 in 10,000 Americans. 1 in 10,000 healthy American adults.

That one fact blew my mind. Why isn’t this on every billboard in America? I didn’t even learn this fact in a completed form, I had to piece together the numbers myself. Did anyone else know this? 

To be clear, I’m not referring to becoming an organ donor after you die, I’m talking about becoming a living donor.

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Over 100,000 people are on the national transplant waiting list, and over 85% of those are in need of a kidney. The demand far outstrips the supply.

In the US, around 7,000 people are living kidney donors each year, and only around 5% of those do so altruistically. The other 95% donate to a friend or family member. Not that that isn’t altruistic as well.

These facts certainly piqued my interest, but what about risk? As a husband and father of four, I didn’t feel comfortable risking my life to donate my kidney to a stranger.

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I learned a few more shocking things, namely:

The chance of death is 3 in 10,000, about the same as childbirth.

The chance of death for a routine colonoscopy is almost twice as much (selection bias plays a role).

The chance of dying on my morning commute is 1 in 107 over the course of my lifetime. Do I feel like I’m risking my family’s livelihood by getting in a car? Of course not. Then why not donate my kidney?

My logical brain was pleased with these numbers.

At work I’d call this an asymmetric bet. It would be like spending $10 to launch a business or marketing initiative that had a 99.9% chance of profiting at least $30,000. It was a no brainer.

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Donating my kidney had a 99.9% chance to save someone’s life and a .03% chance of killing me in the process.

Would I jump in a pool to save a drowning child if my chance of also drowning was .03% Of course!

Almost 50% of every human that ever lived took the same percentage risk to bring life into the world. Why can’t I take that same risk to help save someone already alive?

Then I learned about the kidney voucher program.

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There’s a nonprofit called the National Kidney Registry that partners with certain hospitals. If you donate a kidney at a participating hospital, you receive 5 kidney vouchers for friends or family.

What does this mean?

Well, how much of a shame would it be to donate a kidney to a stranger, and then be unable to donate to a loved one years later? Or to need another kidney yourself? The voucher program prevents that possibility.

Kidney donors get to name up to 5 people to go to the top of the kidney waiting list, should they ever need a kidney at any point in their lives.

Furthermore, kidney donors will also go to the top of the waiting list themselves, should their remaining kidney ever fail.

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Not only is Avery at a high risk for needing a kidney transplant one day, but my brother in law is as well. This means that donating a kidney to a stranger today means that my loved ones are even better protected in the future. A life gets saved today, and potentially in the future as well.

It’s a painful form of kidney insurance for loved ones.

I also learned that (barring rare complications), there are no long term negative effects of donating. There are no medications to take or a strict diet to follow, I only have to try and stay generally healthy, as I’m already doing anyway.

To be clear, if someone undergoes anesthesia and has an organ removed from their body, there are certainly immediate and future potential risks, but these risks are very rare and very well documented.

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I also learned that donors can be reimbursed for lost wages or travel expenses, and that there are no out of pocket medical costs whatsoever.

The main downsides are the pain and recovery time, and the slight risk of complications.

Learning these things sealed the deal for me, so I started the process of becoming a living kidney donor.

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It’s been a months-long process that included:

8-10+ blood draws and trips to the hospital

Hours of interviews with psychologists, nutritionists, social workers, doctors and nurses

Time spent in prayer and counsel with my immediate family

After completing about 80% of this process, I got busy with work and set this aside for a couple months. And then, something tugged at me to complete the approval process, so I did.

In April of 2023 I was officially approved to become a living donor. I could choose to donate any time within the next year. I was having a hard time finding the time with a busy family and work schedule.

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Days later, it hit me:

Sam’s birthday is May 10th. He would have turned 9. I can donate my kidney on his birthday to honor his memory and pay his gift forward.

So that’s exactly what I’m doing. At 6:30am on May 10th, 2023, I’m donating my kidney to a stranger.

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Months earlier, when I was still praying about and weighing this decision in my mind, I found myself sitting in Sunday school. The teacher randomly picked on me to read a verse, so I did:

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Matthew 22: 37-39

Jesus said unto him, Thou shalt love the Lord thy God with all thy heart, and with all thy soul, and with all thy mind.

This is the first and great commandment.

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And the second is like unto it, Thou shalt love thy neighbor as thyself.

That was my answer. My neighbor needs a kidney, and I have one to spare.

Isn’t it incredible that 1 in 9 adults experience kidney disease, yet all of us have a spare to offer?

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Easier said than done, right? I’m afraid. I’ve always been afraid of blood and needles and have never been admitted to the hospital. 

When my brother in law needed a kidney in 2014, I selfishly procrastinated getting tested to be his donor, simply out of fear. My other brother in law donated to him instead, and I was relieved.

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Why am I writing all this? Well, for two reasons:

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1. I’m an introvert. Being in the spotlight is my nightmare. I seriously considered not telling anyone except close friends and family about this surgery. And then I remembered that it was a random Facebook post from a stranger that first sparked the idea for me.

2. My donation has already started a chain of kidney voucher donations that will affect 3 people. At least 3 lives saved from 1 humble Facebook post that I stumbled across 15 months ago.

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What if my story has a similar effect on someone else? On just 1 other person? Would it be fair to someone awaiting a kidney if I didn’t tell my story?

Tell someone that you’re donating your kidney to a stranger, and they look at you like you have two heads. And of course they do! And why do they? Asymmetric information.

That’s also why I stopped soliciting feedback from others about businesses I’m starting. If I spend 100+ hours doing research on starting an iPhone screen remanufacturing company, and then tell a friend about the idea who knows nothing about it, I’m likely to get negative feedback from someone much less informed.

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That feedback may likely prevent me from launching at all. The same principle applies when donating a kidney. Only a few hundred people donate to a stranger per year, because most people don’t even know that it’s a thing.

Sending someone a link to my story here will be an efficient way of explaining my “why” to friends and family that are understandably concerned or confused.

This will be a brand new experience for me, and like Avery when we got the call, I’m both scared and excited. I hope that this experience will give me more empathy for what my daughter went though, and others dealing with health challenges as well.

All I know is that my kidney will be going to someone on the west coast. At 6:30am on May 10th a surgeon will make a 4 inch incision around my belly button, and two other 1 inch incisions alongside it. He’ll lay me on my side, pump my abdomen full of carbon dioxide to make room, push my organs aside, cut the vein, artery and ureter that connects my left kidney to my body and remove it from my body.

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The kidney will go in a box and on a plane to California, to be immediately implanted into my recipient. I learned that my recipient has an autoimmune disorder that disqualifies them from 80% of kidneys, but my genetic makeup happens to make it a match.

I pray they turn out ok. That’s the only thing I know about them, and I will likely never learn their identity. That’s ok.

If all goes well I’ll only be in the hospital for 1 night. Recovery should take a number of weeks. After that, life should go back to normal. My lifespan won’t be shortened and I can keep doing endurance events.

It will be a month of discomfort to save a life and honor Sam’s memory, such a small price to pay. Thank you, Sam! We love you and can’t wait to meet you one day.

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For more information on the Kidney voucher program or living donation, please check out kidneyregistry . org and donatelife . net

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Thanks for reading.