April is National Organ Transplant Awareness Month

While I applaud those who have the little heart on their drivers license indicating they're willing to be an organ donor when they die, I have a friend in North Carolina who is a true organ donor hero.

At least in my eyes. And her little friend, Princeton's eyes.

I cannot tell the story any better than she does. So, here's Ann's story. (Suggestion: Get your tissues ready!)

On April 15, 2000, my long-time friend and co-worker gave birth to her second child, a little male cherub who seemed perfect in every way. He was the cutest thing, and had the deepest dimples, even as a tiny baby. He was a good baby—never fussy or irritable.

Immediately after his birth, he experienced what appeared to be a classic newborn case of jaundice. He was placed under a bili light for a few days, and his mom placed his bassinet near the window, which helps diminish jaundice as well. It seemed to resolve, and he thrived for a couple of months. When she took him in for his 3-month appointment, she alerted the doctors, as she had on prior visits, that Princeton’s little belly seemed large in comparison to the rest of his body, and that his color was too deep of a yellow. The doctors had shrugged her off several times. On this visit, Princeton saw a nurse practitioner, who took a closer look, and agreed that further testing needed to be done.

His labwork was drawn, and later that day, his mom’s heart was breaking, and the nightmare started to unfold. His liver enzymes were dangerously elevated, his blood clotting factors were at critical levels, and he was sent immediately to the nearest pediatric hepatologist (liver specialist). He was promptly hospitalized and the lifetime of pokes, prods, and nasty medical tests began. He stayed at that facility a week, and was diagnosed with biliary atresia, a congenital defect, meaning that his bile ducts never formed, therefore did not drain, and this caused diffuse scarring of his liver, and immediate liver failure. She was told that he would need eventual transplantation, but there were several avenues that the doctors/surgeons wanted to explore first.

As we live in the day of managed care, of course Princeton couldn’t remain with the doctors that his mom had grown to trust and rely on. Because of insurance management, he was sent to a larger facility almost 3 hours from home. This became a blessing in the end, because this facility was experienced at handling many more pediatric cases, very successfully.

More tests were done, and a surgery was done in an attempt to form bile ducts using pieces of small intestine. It seemed to work for few weeks, his color was slighty pinker, but, as is usual with this procedure, after a few weeks, the surgery failed and he was back to Ground Zero.

The next year was spent in and out of the hospital. He would become very easily dehydrated. Since he couldn’t digest fats, everything he ate literally “ran right through him.” He looked like a little concentration camp victim. He never faltered or failed to give a smile, though. He always had the sweetest little disposition.

In the fall of 2001, a pediatric liver of his same blood type became available. The transplant surgeons had to make the call to give it to a child who was much sicker, using the scores that keep everything fair. His parents were devastated, of course, but never felt bitter (isn't this a lesson to us all?), because this was someone’s child as well. And as sick as he was, everyone was awestruck that Princeton never ACTED sick.

After New Years Day 2002, the surgeons told Princeton’s parents that he would surely die within a few months if he didn’t get a liver. They were advised to talk to family members and friends, to see if anyone would consider living liver donation. Princeton’s mom is a different blood type, which excluded her from donation, and his dad is a big strapping fellow, which meant his liver would be way too large for such a little fragile guy. No one else in the family would agree to be tested, not because they didn’t love Princeton, but because they were fearful for themselves and their own children.

Around the middle of January, I received a call at work from my friend, his mom. I had just started a new job, six months earlier. Her voice cracked and wavered. She knew that I was the same blood type, and asked if I would consider donation. She said that she understood if I couldn’t, and that it was one of the hardest things she had ever done in asking me, but that she didn’t want to lose him. I wasn’t taken aback at all, but I was very humbled (another lesson!), and told her gently that I would discuss it with my family, and would let her know very soon.

I thought about things on the long drive home that afternoon, and was washed in THE most peaceful feeling I’ve ever experienced. I knew it would happen and I knew that all would be fine. I sprang everything on my husband and two daughters when I got home that evening. I told them that I knew it sounded scary, but that I wasn’t afraid. I asked for their permission to proceed. It was a unanimous vote for Mom to get tested. I also shared the news with my own mother and my best friend, both of whom promptly hit the roof. I managed to pull them back down, smooth everything out and tell them to deal with it, because it was going to happen, with or without their support.

Of course, being one of the largest facilities in the Southeast, it took FOREVER to get an evaluation appointment at Duke. It was March 23 before I was able to schedule the first, which consisted of meeting with the surgeons, discussing the actual surgery, and them asking me 10,000 times if I really wanted to proceed. I also was weighed against my will, had an EKG and Chest x-ray done, and had 30 vials of blood drawn. I told my husband that night, that if I passed all the blood tests, I was sure it was safe to keep sleeping with me. (LOL!)

I passed all those tests, and went the next month for an MRI with contrast. The month after, I went back for an angiogram. In June, I went for an ERCP, the most vile of all the tests, and passed out vomiting in the shrubs after the test, waiting for my husband to pull the van around. I passed all with flying colors (I’m a healthy old heifer), and the surgery was scheduled for 6/24/02.

On that morning, I was at the hospital at 5am, and was promptly disrobed and knocked out, and surgery started for me at around 7am. We were in parallel operating rooms, and a surgeon was brought in from Kansas City, as this was a relatively newer procedure, and he was qualified to perform it. Each of our surgeries took about 8 hours.

My first recollection was around dinnertime, waking up, seeing my hubby, mom, girls, Princeton’s parents and all my sibs gathered around the bed. I thought I must have died, because I couldn’t imagine everyone had traveled that distance to see me. I finally choked out enough air to ask how the baby was. There were grins all the way around. He was doing fine, as was his brand new liver.

For the surgery, the left lobe of my liver was removed, as were half of my bile ducts, arteries and veins. Some spare vein was taken from my left thigh to give him enough to grow on. I awoke with a big thick Mercedes incision across my belly, an incision on my thigh, various drains, catheters, IVs in my neck and arms, and heart monitor, etc.

It was still THE BEST feeling in the world, knowing how Little Guy was doing. I was in ICU overnight, and then transferred to the surgical unit. I never had much pain, just awful nausea and some deep soreness. Of course I walked and walked, but the best walk was what seemed like 2 miles across the hospital (wearing my floral print muu-muu), to see Princeton when he was finally off the ventilator, a couple of days later. His mom plopped him in my lap and I honestly felt like he was mine.

I went home on Saturday, after Monday’s surgery. Princeton went to Ronald McDonald house about a week later, and had to stay there a little over a month, until the docs were sure all was fine. His mom sneaked him home before it was time, because he was pining for all the home folks. They made a quick visit, and then made the 3 hour trip back.

In the almost eight years since the surgery; he’s done very well. He’s had a few episodes of mild rejection and bounces back harder each time. He’s the star of his class, and wins the heart of everyone he meets.

The only fear I had going into the surgery was financial. I’d just started a new job and had only minimal paid time off available. I told the Universal powers that be, that if this was indeed Divine Will, I would appreciate some help with this. I was touched and surprised when I returned to work, after 6 weeks, with 400 PTO hours LEFT in my bank. My co-workers had banded together, most of whom I didn’t even know, and had donated time to me. I still cry when I think about their generosity. (I still don't understand why it takes a crisis for folks to band together, but I'm sure grateful when they do, aren't you?)

My message here is long, but important. Please, if the need ever arises, consider organ donation, whether it’s during this lifetime, or after you or a loved one passes. The whole experience has been such a blessing to my life, as I watch this little fellow growing and striving. He’s one of our hopes for tomorrow. There are plenty more out there just like him, waiting to be nurtured and healed.

Oh, and I made three predictions to his mom as I held him in my arms that day in the hospital: he would love white women (he’s not white), his favorite word would be (mine), and he would love peanut butter (he wouldn’t touch it at the time, but it’s my all-time favorite food). So far, all three have come to pass.

Here is what Little Man looked like just a couple of weeks before surgery:

And here is three weeks after surgery, when his mom brought him home for a surprise visit:

And here we are in April 2010, on my front porch steps:

God Bless you Ann and Princeton. And all the lives you've touched with this story.

If this doesn't move you in some way, your heart is made of stone. And you might even need a heart transplant. ;)

Now, if you don't have that little heart on your drivers license, will you reconsider?

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