(Click here to read about Bilary Atresia in our Liver Disease Guide)

My name is Meadhbh McGivern. I am in my mid-twenties and reside in Co. Leitrim. I share my story of living with bilary atresia, a rare liver disease I battled since infancy. My journey was one of perseverance, medical challenges and the unwavering support of my family.

My health odyssey began shortly after birth when I developed jaundice and lethargy, symptoms that led to my diagnosis at Crumlin Children’s Hospital. The early years of my life were marked a successful Kassai procedure, a critical surgery performed to restore bile flow from the liver. Despite the initial success, I faced recurring health issues, including the development of oesophageal varices, which required repeated medical interventions including banding and injecting under general anaesthetic.

Growing up, I contended with polysplenia, a condition that enlarged my spleen, restricting me from everyday childhood activities and sports, and isolating me during my formative years. The physical manifestations of my condition often left me feeling conspicuously different, particularly during social events where I couldn’t participate in the same activities as my friends. I was merely an outlooker at birthday parties when it came to swings, bouncy castles and trampolines. Cycling was a no-go as a fall could have resulted in a ruptured spleen which could have had a fatal outcome.

The impact of my liver disease extended beyond the physical: it affected my cognitive abilities, challenging my concentration and memory. This profoundly affected my education, making schoolwork and examinations a formidable struggle.

As I matured, the severity of my liver disease necessitated a liver transplant. Due to the absence of paediatric transplant facilities in Ireland, arrangements were made for to receive at King’s College Hospital in London, a testament to the collaborative efforts between the Health Service Executive (HSE) of Ireland and the National Health Service (NHS) of the United Kingdom. My initial assessment in 2007 marked the beginning of a new chapter in my healthcare journey.

The journey to a liver transplant is a testament to human resilience and the wonders of modern medicine. My Dad was found to be compatible and was ready to give me the gift of life through a living donation. Compatibility brings hope, but as life’s unpredictable nature unfolds, my growth necessitated a full liver transplant opposed to the liver lobe would have received from my Dad. I was placed on the transplant in August 2010, and the wait began.

As months passed, my health deteriorated. School becomes a memory, and pain becomes a constant companion, only held at bay by morphine’s numbing embrace. The ever-growing spleen presses mercilessly against my other organs, and the sanctuary of sleep is found mostly in the confines of a bed, battling fatigue and the fog of medication.

In September 2011, the long-awaited call pierces the silence. A flight to London marks the start of a new chapter. Prepared for surgery the next morning, the complexity of the procedure unfolds. Over 60 litres of fluids, including blood and plasma, are administered during an operation that stretched beyond 14 gruelling hours.

Recovery in London, spans threes weeks before a transfer to Crumlin Hospital, marking the final leg of hospital care. Discharge day arrives, and with it, a new beginning. The changes post-transplant are profound: the absence of pain, a decrease in fatigue, and the joy of reclaiming a life once paused. Exercise, improved memory, and concentration are gifts of this second chance.

The achievements that followed are remarkable. Returning to Secondary School, conquering the Junior Certificate, despite a year and a half lost to illness. Secondary school culminates in success with the Leaving Certificate, a PLC in Sligo paves the way to college, where a BA Honours in Social Science from Maynooth University is earned.

The gift of a liver transplant has been a transformative experience, granting me a renewed lease of life. This incredible medical intervention has not only expanded my lifespan but has significantly enhanced the quality of my days. With a healthier body, I’ve been able to relish the joys of life’s simple pleasures -like the exhilarating atmosphere of live concerts, the thrill of exploring new countries, and the invaluable moments spent creating memories with my family. Each of these experiences is now imbued with a deeper appreciation, as they represent the precious opportunities afforded to me by this life-saving procedure.

My narrative is not just a personal account, it’s a story that highlights the complexities of living with a chronic illness, the importance of international healthcare cooperation, and the indomitable human spirit. My experiences underscore the need for continued research and support for those living with rare diseases and the live-changing potential of organ transplantation.