Ambassador Stories
May 5, 2022

Going From ‘Crigler Kid’ to Post-Transplant Adult

Featured imageThomas is in a black graduation gown, playing a blue and white electric guitar.
I’m traveling new paths, navigating the intersections of my past and present selves.

Condemned to a life of medical woe before even being born, I emerged as a 1-pound, 13-ounce premature miracle. With skin that was nearly luminescent because of inexplicably severe jaundice, I began to attract immediate attention from concerned professionals. Halfway through a three-month stint in the NICU, I was diagnosed with Crigler-Najjar Syndrome, Type One — a “needle in a haystack” genetic condition that nullified my body’s ability to rid itself of naturally occurring toxic byproducts. 

Unfortunately, my complicated origin story was only the first stepping stone in a long, at-times treacherous path. After undergoing surgery for a pair of hernias and then again for gallbladder removal, my life prior to turning three was riddled with hospital stays and hurdles a plenty. But despite my condition, the ages between five and nine were different: I was graced with a period of “normalcy” that allowed me to experience life just like my peers. Under an onslaught of responsibilities such as school, piano lessons, baseball and friendship, worries about my health (or lack thereof) faded into the distance. In fact, if it hadn’t been for the galactic blue hue spilling from my bedroom each night, betraying the secret of the phototherapy lights within, the world may have never known I harbored a darker truth inside. 

All of this changed in August of 2009 when my family and I made the momentous decision to place me on the transplant-recipient list through Boston Children's Hospital. Blessed with an unusually quick turnaround, only two months passed from the time I was listed until the morning my family received the call informing us that a donor had been found. 

From the moment the phone rang, piercing the morning silence like breaking glass, I could feel the air shift; the atmosphere was charged as if the world knew that life itself was about to change. One simple call turned the next ten hours into a flood of activity, emotion and vast unknowns. After an inordinate amount of confusion and stress devoured the day, it was suddenly 10 p.m. and I found myself lying in a hospital bed with my parents huddled around me. As they said their good-byes, the pre-op nurses prepared the first round of anesthesia. The three of us knowingly made eye contact, aware the river our family was about to cross ran swift and deep.

Unable to find peace, my parents grappled with their worries, standing guard against the crawling night. As a new morning arrived and dawn spilled into the sky, the sun rose on this next chapter of my life. The initial ten days I spent as a patient in Boston Children’s consisted of rehab and recovery, adapting to an unfamiliar list of necessities that this unfamiliar role of transplant “recipient” demanded of me. I was discharged as a tentative outpatient from the Pediatric Transplant Center at Boston Children’s Hospital with high spirits and good health, frames of body and mind I would soon lose to a cascade of internal issues.  

After a turbulent two years replete with countless surgeries, setbacks and near reenlistment on the transplant list, the dust finally settled and I found myself clinging to a fragile sense of stability and health for the first time since receiving my liver. 

It's like when I was young I had an outfit that I loved and wore all the time. These clothes, my identity that included being a child with CN1, represented me — they were comfortable. Then one day, when I was slightly older, something changed and that first outfit was no longer appropriate — I couldn't wear it! The clothes no longer did me justice, represented who I was, made me feel like myself. I donned a new outfit and learned how to adjust, how to settle in, and eventually these threads began to feel like home as well. I could still see my first outfit in the closet — my pre-transplant identity — but I knew I could never wear it again. 

In the future, now even older, the status of my health changed yet again. Once more, I had to abandon my current set of clothes. I still loved this outfit, felt connected to it, but yet again, the style soured and became inappropriate, not quite acceptable for who I am: a creative, free-spirited college student carving a path toward the future through art, music and positive intention, dragged down by the hidden weight of scars past. So now, at the onset of my graduation, I have two outfits in the closet I can look at, remember, think about, touch even — but not wear — and I’ve struggled to find a third, leaving me proverbially exposed in this arid purgatory of self. 

I had spent my entire life growing as a person, defining myself — who I was, in these two outfits. Now, as a young man, I'm left standing completely naked, unable to don the clothes I'd worn my entire youth but unable to conjure a new outfit out of thin air. More than ten years after my transplant and I’m standing here stuck … alone ... my lights have gone out but I’m still just as raw, as exposed as I once was. Each and every day when I wake up, it's left to me, thread by thread, to tailor a new outfit that I can confidently call my own skin, an absolute sense of self. 

If you have been impacted by
Crigler-Najjar syndrome type 1
learn more about the benefits of joining AllStripes
by visiting our
Crigler-Najjar syndrome type 1
research program page.