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How organ donation saved my son's life: a mother's story

As a mother, there are some conversations you never expect to have.

For us, it started on the Friday before Christmas when our 18-year-old son, Jack, was told that he needed a liver transplant.

Jack had been living with a rare autoimmune liver condition for two years. What had begun as a diagnosis we hoped could be managed had unfortunately progressed rapidly, leaving him needing a transplant much sooner than anyone had expected.

The weeks that followed were filled with appointments, assessments and meetings with different specialists. Towards the end of January this year, we were told that Jack was being placed on the transplant waiting list.  That moment brought a whole new set of emotions.  From then on, every phone call felt significant. We knew that one day "the call" would come, but we had no idea when.

My mind was constantly full of questions. Where would Jack be when he got the call? Where would I be? How quickly could I get to him? Where were my parents, who had agreed to be on standby for our younger son? How would we all react when the call finally came?

As a parent, one of the most difficult aspects was that Jack is now an adult and was rightly treated as such throughout his care. While I completely understood this, it was sometimes hard to reconcile with the fact that he is still my boy.  The hospital staff recognised this. On one occasion, when Jack was particularly unwell, I received a call asking me to come in earlier because, as they put it, "he just needed his mam." Those words have stayed with me ever since.

The care we received throughout this journey was extraordinary. The staff at the hospital are simply amazing.

When we were told that a liver had become available, he happened to be in hospital because he was so unwell. It was just the two of us together in his room when a lovely staff nurse and matron came in to share the news. Shortly afterwards, the transplant coordinator called me directly because she knew how poorly Jack was at the time and wanted to make sure we understood everything that lay ahead.  Those acts of kindness meant more than they will ever know. When the call finally came that a liver was available, the overwhelming emotion was not panic.  There were tears, of course, but more than anything there was an unexpected sense of relief. After months of waiting, worrying and wondering, there was finally a chance for Jack to get the transplant he desperately needed. 

The waiting during the operation felt endless. Fear and gratitude sat side by side. We were terrified about what could happen, but at the same time overwhelmingly thankful that Jack had been given this opportunity.

Throughout the process, we also had to think about our younger son, who absolutely idolises his big brother. We wanted to be honest with him whilst also protecting him as much as possible. Trying to navigate those conversations as parents was incredibly difficult.

What got us through was the support around us.  Our family, our friends, our colleagues and workplaces all wrapped themselves around us. Whether it was practical help, messages of support, checking in on us, or simply being there when we needed someone to listen, we genuinely could not have got through that time without them.

One thing that helped me enormously during this time was something very simple. Someone took the time to sit with me and talk about their own family's transplant journey. They shared their experiences and it made such a difference. Hearing someone explain what those scary medical terms actually meant, including words like "rejection", made them feel less daunting and less overwhelming when they happened to us. That conversation helped me more than that person will ever know.  Throughout this entire journey, I have often thought that if sharing our experience can help just one other family who finds themselves in a similar position, then I would like to do that for them. If our story can provide some reassurance, comfort or understanding during such an uncertain time, then it is worth telling.

Despite everything we were going through, there was one thought that never left us.  Somewhere, at some point, another family would be experiencing the worst day of their lives.  For Jack to receive the gift of life, another family would have to experience unimaginable loss. We were acutely aware of that reality every single day we waited.

About a week after his transplant, our family of four were together again.  That moment is one I will never forget.  To have all four of us in the hospital room, after everything we had been through, felt incredibly emotional. There was relief, exhaustion, gratitude and hope all wrapped into one.

His recovery was not without challenges. In total, Jack had 3 operations and spent around four weeks in hospital and there have been ups and downs along the way. As a parent, the fear doesn't simply disappear overnight. The reality is that Jack handled the whole process far better than I did. He showed a strength, maturity and resilience that made me incredibly proud, even when he was facing some very frightening conversations about his future.

What continues to amaze me is Jack himself.  This all happened during what should have been his A-Level year. While many young people were focused on exams and university applications, Jack was facing a transplant and everything that came with it. Through it all, he showed strength, maturity and resilience far beyond his years.  However, the clever lad has come through it all and is now heading to Newcastle University to study for a Master's degree in Mathematics.  As his mam, I could not be prouder.

We will never be able to properly express our gratitude to the donor and their family. In the midst of their heartbreak, they made a decision that gave our son the chance to live his life.

Register or confirm your decision for organ donation here. One day, it could help save or transform someone's life, just as it did for Jack.