Hudson Hill was born with biliary atresia, a liver condition that affects a baby’s bile ducts. At only 2 months old, Jordan Hill’s beautiful blue-eyed baby with long brown locks was in dire need of a new liver. His only hope was a donor. Below, Jordan explains the hopelessness she felt after her son was diagnosed and why she now advocates for organ donation.
At 6 weeks old, my son, Hudson, was diagnosed with a rare liver disease. As parents, you do everything in your power to protect your children. Despite our efforts and optimism, we couldn’t protect Hudson from his failing liver. We faced a truth that no parent should: without a new liver, our son wasn’t going to survive and there was nothing we could do about it. At 12 weeks old, Hudson was officially placed on the national organ waiting list. As I reflect on how I felt that first year, I always come back to the same word: helpless.
A living nightmare spurs advocacy
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 was when I heard the words “liver transplant evaluation” mentioned about Hudson. Life as we knew it changed the moment those words were uttered.
My initial reaction to those words felt much like what you see in a movie: shock, denial and anger. “This can’t happen to him,” “This isn’t real,” “This isn’t fair,” flashed in my head as I unapologetically sobbed in my chair, sick to my stomach.
I remember standing up to avoid eye contact with the doctor, my husband and even Hudson. I knew that if I made eye contact with one of them, I wasn’t going to be able to keep it together. Through tears, I looked down and saw the bustle of the city. People walking into coffee shops, on their phones, grabbing lunch, waiting for the bus. People were going about living their lives completely oblivious as my world fell apart. I thought to myself, “How could people be living so care-free and going about their lives while we are up here living our worst nightmare?”
I was forced to face the fact that there was nothing more I could do for my baby. He needed a new liver. The overwhelming sadness and nausea I felt at that moment were 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 cheeks as I realized that Hudson’s fate was now up to someone else.
My journey advocating for organ donation began that day.
When Hudson was placed on the national organ wait list, that feeling of helplessness reared its ugly head once again. We were reminded that our son’s life, our family’s life, was dependent on someone else. How could I consider myself a decent human when I wished for Hudson to be saved, knowing that saving him could potentially mean another family losing their loved one? I struggled with that concept. Then came our family’s saving grace – the option of using a living donor.
My husband and I didn’t qualify as donors and before we even had a chance to reach out to our friends and family, Hudson’s Uncle, United States Army Special Operations Command Col., had already contacted the hospital. Trevor was evaluated at the and was approved to be Hudson’s living donor. Hudson’s perfect liver was right in front of us all along. Suddenly, the nauseating feeling of helplessness started shifting to a new, unfamiliar feeling: hope.
On July 10, 2017, the doctors at UW removed a portion of my brother-in-law’s liver and the surgeons atsuccessfully transplanted the graft into Hudson. I don’t use this next phrase lightly: That day saved not only Hudson’s life, but my husband’s and my lives as well.
A second chance
It has been almost 2 years since we were introduced to that feeling of hope, and each day that has gone by since has brought new emotions – joy, excitement, optimism, and pride. Today, Hudson is not only growing – he is thriving.
So why do I advocate for organ donation? Because it physically pains me to think of another family feeling consumed by the helplessness our family felt for so long. I advocate because I understand the fear that accompanies that helplessness. It’s a fear of not only the unknown but a fear all transplant patients must face: a second chance at life might never come. Not everyone gets a happy ending. Not everyone gets the opportunity to be introduced to hope like Hudson and our family did.
I want to change that.
I want to do everything in my power to make sure no person or family is deprived their happy ending. So, I advocate. I write. I talk. I take pictures. I educate. I have conversations.
There is 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 people in the U.S. support organ donation, only 58% of people are 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 organ waiting list.
The truth is, there are more people waiting for hope than there are receiving it. And that’s where our work begins. Together, we can make a difference. By registering as a donor or inquiring about live donation, every person has the ability to change a person’s ending. By registering as an organ donor, every person has the potential to introduce hope to a family that would be otherwise consumed by helplessness.
“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