A New Life, a New Liver: My Three-Month Old Son's Recovery from Transplant Surgery

Feb. 2, 2016, was the day the world began, and April 21 was the day it seemed to end. I remember both days so well, but for completely different reasons.

Feb. 2 was the day when my son, James, was born. And April 21 was the day that doctors told us James’ liver was failing and he’d need a liver transplant to save his life. He wasn’t even three months old.

James came into the world just after noon on that February day, a perfect 8 pounds, 6 ounces. We took him home from the hospital after two days and the first two months of his life were absolutely blissful. My wife and I fell for our son, and we fell hard. Aside from the usual feeding, burping, and diaper changing, we did nothing in those first weeks but sit on the couch looking into the eyes of this beautiful, helpless little creature. It was pure joy.

Two and a half months after taking James home from the hospital, we found ourselves back in it, but for very different reasons.  James was suffering from jaundice that just never went away. At first, the doctors thought it was nothing, and then all of a sudden – well, it wasn’t nothing. The course of events from that period happened so quickly, so frantically, it all seems now as if we were in some bad dream that we couldn’t shake ourselves out of. One day we were in the ER, the next we were being told he needed a liver transplant; days later, as we literally witnessed life vanishing out of his little body, the doctors told us they’d found a liver for him – a donation from a one-year old “angel” baby who had died of head trauma.

For those of you reading this, I hope you never have to do what my wife and I had to do with our little baby. Escorted by two nurses, all four of us dressed head to toe in surgical scrubs, we rolled James down in his hospital bed to the operating room. The nurse who greeted us added an extra syllable to his name so it sounded like “Jam-es.” It’s the only specific detail I remember from that drop-off. To this day, in moments of playful activity, we occasionally still call him “Jam-es.”

That evening, readying ourselves for a night of hellish waiting in the hospital, we had family bring us dinner, and we parked ourselves in the ICU lounge and put together a puzzle. As the doctors operated on our son, we were meticulously fitting one piece into another, four floors above the OR. I didn’t give up that night until we finished that puzzle, as if my own willfulness could engender some sort of positive omen for what was happening to our son. The thought of it makes me cry now.

That night, at around 3 AM, with no hint that surgery was nearing completion and completely exhausted, I took a nap in the ICU lounge. An hour or two later I was awoken by our surgeon. It was good news. The surgery had gone well. James had survived.

The way the doctors had described it to me, a liver transplant is a lot like putting in, say, a new sink. You take the old one out, hook up the new one, and voilá, it works. Within days, James’s color was normal. His skin, previously a sickly yellow, was now pink and healthy. Sure, there were scares in the days and weeks following his transplant. Too many moments of anxiety to even want to share. He went back to the operating room two more times, with each trip down not any easier than the first. In those early days, his liver function numbers were still scarily abnormal. But within a couple of weeks, with the aid of 11 medications, he was almost completely “normal.”  So normal, in fact, that we left the hospital on May 14, 23 days after we entered.

Trapped in that hospital, for weeks and weeks on end, there wasn’t much to do but wait for the doctors and be together. We read a lot to James in the days before and then after his surgery. We got through three Roald Dahl books in only a week’s time. I truly believe that the spoken word has a healing quality to it. It’s uniquely human. It contains the life force.

I look back on this episode and I’ll never fully understand why this happened. The odds of something like this happening to a baby are astronomically low. In the United States, there are close to four million babies born each year. The number of liver transplants performed on children less than 1 year old is fewer than 100 per year. And yet, we’re lucky James is alive. We’re lucky we landed at a hospital like Columbia, which has one of the best success rates for liver transplants in the world. We’re lucky James had the spirit to keep on fighting. We’re lucky he got a liver. 

We stayed strong for James during that period, and his bravery and resilience kept us going, too. I guess that’s what it is to be a parent – never giving up. Always being there for your kids. There’s a line in the opening frames of The Revenant that struck me so deeply during our hospital stay, when the lead character (played in the film by Leonardo di Caprio), says to his young son:  

 

“It’s okay, son. I know you want this to be over.  I’m right here. I will be right here. But, you don’t give up. You hear me? As long as you can still grab a breath, you fight. You breathe … keep breathing.”

 

It’s a mantra I repeated, in one form or another, day after day. And thankfully, he continues to breathe almost five months after the surgery that saved his life.

Andrew Robinton, James' father