The day I became my daughter's lifeline: A mother's journey through living donor transplant
I awoke to the voices of medical professionals, the bright lights above, and a searing pain across my body. But it wasn't just my health that concerned me; my baby daughter, Ruby, was about to undergo a life-changing procedure. On that fateful day, June 11th, our family embarked on a journey that would forever alter our lives.
Ruby's story began in October 2023, when she entered the world seemingly healthy. But as the weeks passed, alarm bells rang. Feeding and weight gain became a struggle, and at two months, ultrasounds revealed a shocking truth: Ruby's body was filled with fluid. Rushed to Great Ormond Street Hospital (GOSH), she received a life-saving diagnosis—PMM2-CDG, a rare metabolic condition affecting only 1,000-2,400 people worldwide.
This diagnosis marked the beginning of a challenging journey. Ruby's condition impacted multiple systems, with her liver suffering the most. The resulting fluid retention, inability to gain weight, and catastrophic seizures terrified us. Her liver's failure to filter blood led to toxic ammonia levels, requiring full resuscitation and admission to the pediatric intensive care unit (PICU).
As a transplant was initially considered a last resort, we held onto hope. But soon, it became clear that a transplant could be transformative. After careful assessment at King's College Hospital, including scans and discussions, Ruby was confirmed as a candidate for a liver transplant—the first PMM2-CDG patient in Europe to receive this chance.
And here's where it gets personal: I knew I had to be her donor. Not only was I healthy and a genetic match, but I couldn't bear the thought of waiting for a deceased donor. As her mother, I felt it was my duty to give her a part of myself.
The living donation process was intricate and risky, but I was determined. Assigned a transplant coordinator, Matilda, I navigated the emotional rollercoaster. She helped me understand the clinical complexities, allowing me to prepare mentally and process the whirlwind of emotions.
Our initial surgery date in April seemed distant, but little did I know, we'd wait longer. Liver transplants in babies are complex, and with a live donor, the logistics are even more challenging. We needed two surgical teams, two theaters, two ICU beds, and more. Only 15 such surgeries happen annually.
In April, another child's critical condition took priority. Our surgery was postponed until May. Keeping Ruby well during the wait was a constant worry, especially in the hospital environment. Even minor health issues could derail the surgery.
On the eve of the May surgery, Ruby's blood test results caused concern. While perfect results aren't expected in complex cases, kidney function is crucial post-surgery. The surgeons' decision to cancel was a relief, showing their dedication to her well-being.
Finally, in June, we got the green light. I spent the night before in Ruby's hospital room, preparing for our journey. My surgery was first, and after removing the liver segment, they'd bring Ruby down. The atmosphere among the medical team was surprisingly upbeat, and before I knew it, I was under deep anesthesia, mid-sentence.
As I awoke, news of Ruby's successful surgery lifted my spirits. In the ICU, I recovered, and after two days, I reunited with Ruby in the PICU. Seeing her intubated and surrounded by IVs was heart-wrenching, but my mother's instinct assured me she'd be okay.
Post-transplant, Ruby's progress was remarkable. Her body, once weak, now had strength and energy. She gained weight, fed better, and her cognitive development soared. Her eyesight improved, and she engaged with the world around her. The transplant was a turning point, placing her in a position to benefit from future therapies like gene therapy.
But challenges remained. The first year post-transplant is notoriously tough, with high immunosuppression levels to prevent rejection. Ruby became more susceptible to illnesses, and while her developmental progress was a joy, my hope for a healthier, hospital-free life remained unfulfilled.
After a brief respite at home, we found ourselves back at GOSH for Christmas. While it was our second hospital Christmas, we knew it was just another hurdle. Supported by family, friends, and an incredible community team, we continued our fight.
Being Ruby's donor was a decision driven by love and instinct. When you meet Ruby and others like her, you see beyond the diagnosis. These children are vibrant, funny, and full of life. Supporting them is not just a choice; it's a privilege.
