Written by Jordan, Hudson’s mother and organ donation advocate. Edited by CC Cunningham, CKF Program Manager.
My son, Hudson, was born on October 27th, 2016 with a condition called heterotaxy. At ten days old, he underwent surgery to prevent bowel mal-rotation and, while operating, an exploratory search revealed Hudson’s liver was shaped abnormally, had an unusual color, and his bile ducts appeared to be a mass of undeveloped tissue. As parents, you do everything in your power to protect your children. We continued to monitor Hudson but, despite our efforts and optimism, we couldn’t protect him from his failing liver. After a series of tests and imaging, we were hit with the unimaginable news that Hudson had biliary atresia and would eventually require a liver transplant.
I can remember two times in my life when I had physical reactions to hearing news—the type of physical reaction that makes you disregard where you are, makes you forget who you’re around, and, quite frankly, makes you not care about either of those things. The first time I had this reaction was when my mother was diagnosed with terminal cancer. The second time was when I heard the words “liver transplant” mentioned to me about Hudson. Life as we knew it changed the moment those words were uttered and, suddenly, we faced a truth that no parent should ever face: without a new liver, our son wouldn’t survive. I was forced to face the fact that there was nothing more I could do for my baby. The overwhelming mix of grief, shock, disbelief, and fear I felt at that moment was a manifestation of the helplessness I had felt since Hudson was born and diagnosed. I had to admit to myself that we were no longer the family that beat this. We were no longer the exception. Tears flowed down my face as I realized that Hudson’s fate was now up to someone else. Hudson underwent a Kasai procedure, a surgical procedure that reconstructs the bile ducts—our final hope in delaying his need for a transplant.
Four weeks after the Kasai, Hudson became lethargic and refused to eat. He spiked a fever and began throwing up. We immediately took him to the emergency room. Once admitted, Hudson’s health continued to decline and he was transferred to the pediatric intensive care unit (PICU) to be treated for septic shock and cholangitis. We spent almost three weeks in the hospital and it was decided that, at just shy of three months old, it was time to list Hudson on the United Network for Organ Sharing (UNOS) National Waiting List for a new liver. When he was placed on the waiting list, that feeling of helplessness reared its ugly head once again. We were again reminded that our son’s life—our family’s life—was dependent on someone else. How could I consider myself a decent human being when I wished for Hudson to be saved, knowing that saving him meant another family losing a loved one? This was a concept I struggled with. Then came our family’s saving grace: the option of using a living donor.
We knew living donation was the preferred direction to go for many reasons. Firstly, if we found a living donor, we knew that Hudson had a guaranteed match, no matter what. Second, if we chose to go down the living donor route, it would improve the chances of someone else on the waiting list receiving their lifesaving gift. Though we were exploring the living donation option, we remained realistic that finding a perfect living match is rare.
My husband and I didn’t qualify as donors and we hadn’t even had a chance to reach out to our family and friends when we found out that Trevor, United States Army Special Operations Command Col. and my husband’s brother, had already contacted the hospital. As soon as Trevor found out that Hudson would need to be listed, he was on the phone with the donor hospital, scheduling a time to be evaluated. Trevor flew from North Carolina to the University of Washington Medical Center in Seattle to undergo testing and evaluations, where, after two days, Trevor was approved to be Hudson’s living donor. Hudson’s perfect match was in front of us all along. Suddenly, that nauseating feeling of helplessness that had become so familiar began shifting to a new, more unfamiliar feeling: a feeling of hope.
What we didn’t know at the time was that we were helping Trevor just as much as he was helping us. Trevor had served five tours in Afghanistan and Iraq, including a mission in 2005 when his Special Forces team was attacked and he was nearly killed. The Humvee that Trevor was in rolled over and two of the four people in the vehicle were killed instantly. Trevor was trapped in the overturned vehicle when it caught fire. Other U.S. soldiers were able to right the overturned Humvee, reach into the flaming wreckage, and save his life. Ever since then, Trevor has wrestled with survivor’s guilt, asking himself questions like, “Why did I survive and those two guys didn’t?” and, “The men who saved my life—what do I do to pay them back?”
Trevor was able to pay that debt back on July 10th, 2017. On that day, surgeons at University of Washington Medical removed a portion of Trevor’s liver and transported it two miles to Seattle Children’s Hospital, where another group of surgeons successfully transplanted the graft into Hudson. I don’t use this phrase lightly: that day not only saved Hudson’s life, but mine and my husband’s lives as well.
Trevor was discharged after five days in the hospital without any complications and, fourteen days later, was able to return home to North Carolina. Hudson spent 40 days in the hospital with minor complications, but in the end was discharged as a completely different baby.
This July will mark Hudson’s second transplant anniversary. It has been nearly two years since we were introduced to that feeling of hope and each day that goes by since then has brought a new mix of emotions: joy, excitement, optimism, gratitude, and pride. I am so grateful of Trevor for his sacrifice and so proud of Hudson for his strength. Looking at Hudson now, it’s hard to believe that, at one point, he was struggling to survive. Today, he is not only growing—he is thriving.
Ever since that day when I first heard the words “liver transplant” as it pertained to my son, my journey advocating for organ donation began. To this day, I continue to encourage people to register as organ donors and spread awareness of what being an organ donor really means. It physically pains me to think of another family feeling the way our family felt for so long—consumed by that heavy feeling of helplessness and fear. It’s a fear of the unknown and a fear that all transplant patients must face: a second chance at life might never come. Not everyone gets the opportunity to be introduced to hope like Hudson and our family did. Not everyone gets a happy ending.
I want to change that. I want to do everything in my power to make sure no person or family is deprived of their happy ending. So, I advocate. I write. I talk. I take pictures. I educate. I encourage conversations.
There is still a lot of work that needs to be done. In a recent survey by the U.S. Department of Health & Human Services, it was discovered that, although 95% of Americans support organ donation, only 58% were registered as organ donors. Out of 36,500 transplants in 2018, only 6,900 were from living donors. As of January 2019, there were more than 113,000 individuals on the national transplant waiting list.
The truth is, there are more people waiting for hope than there are receiving it. That’s where our work begins. Together, we can make a difference. By registering as an organ donor, every person possesses the ability to change a person’s ending. Even just by inquiring about living organ donation, every person has the potential to reintroduce hope to a family who would otherwise feel helpless.
We will never be able to communicate the level of gratitude, appreciation, and love that we have for Trevor and the medical community. What we are able to do is honor Trevor’s courage and sacrifice by sharing our story and, hopefully, inspiring others to register as organ donors and look into living donation.
“If you’re reading this…congratulations. You’re alive. If that’s not something to smile about, then I don’t know what is.” – Chad Sugg