Adam's Story
My son Adam was born on 29th May 2017, but his journey began months before that, with a diagnosis no parent is ever prepared for. I was just 18 weeks pregnant when doctors told my husband Jan and I that our baby had severe and complex heart defects. I remember sitting in shock as they said he had no chance of survival.
We were referred to the National Maternity Hospital in Dublin, and each appointment brought update after update of devastating news. Every week came with more uncertainty, but through it all, Adam continued to grow. We held on to hope, even as we were prepared for the worst.
When Adam came into the world, he was breathing on his own, to the astonishment of everyone. It was a miracle in itself. He was transferred immediately to Children’s Health Ireland (CHI) at Crumlin, but the prognosis remained dire.
We were told he probably would not survive the week. For a brief moment, Adam was allowed to come home, but his condition deteriorated quickly. Doctors began preparing us for palliative care, but we were not ready to give up.
Doctors recommended that Adam be sent to Great Ormond Street Hospital in London, where a world-renowned professor agreed to take his case. Within days, Adam underwent the first of several heart surgeries.
As parents, the road was harrowing. After one operation, Adam went into cardiac arrest and was kept alive by an ECMO machine for over ten days. But against the odds, his strength began to shine through. His weight increased, his colour improved, and his tiny heart, although still fragile, was holding on.
Months passed, more surgeries followed, and Adam’s life hung in the balance, but he never stopped fighting. I stayed in London with Adam for 17 months while Jan returned to Tramore to care for our older son, Simon, and to keep life going at home. We cherished every visit we managed as a family. The most difficult part was the separation of our family. Being apart was heartbreaking. I missed them deeply, and the guilt of not being able to be with both of my children at once was overwhelming.
Then, in September 2018, everything changed. A heart became available. Jan and Simon rushed to London. They were just getting off the train when I called to say they were taking Adam to the theatre.
The transplant was a success. After just five days, Adam moved to a regular ward. Two weeks later, he was transferred back to Dublin, and three days after that, we were finally reunited at home in Tramore.
But Adam’s journey did not stop there. After returning home, he had to attend frequent hospital visits at Children’s Health Ireland at Crumlin, sometimes twice a week. Over time, these visits became less frequent, but to this day, he remains under regular and consistent care.
Towards the end of 2020, Adam began experiencing breathing difficulties. At first, the medical team suspected it might be related to COVID-19 or a series of respiratory infections he had gone through. This uncertainty lasted for several months. Then, in March 2021, one night after Adam had gone to bed, I went in to check on him, and noticed something was very wrong with his breathing. He was gasping, and his breaths were heavy and laboured.
I called for an ambulance immediately. When the paramedics arrived, they checked his oxygen levels and carried out an initial assessment. Everything appeared stable, and they recommended taking him to our local hospital, but I felt strongly that Adam needed to be seen by the team who knew his complex medical history, especially given his heart transplant. So, I made the decision to drive him directly to Crumlin.
Adam was admitted immediately and taken straight to the operating theatre by the ENT team to examine his airways. That day, the worst-case scenario was confirmed: Adam was diagnosed with PTLD (Post-Transplant Lymphoproliferative Disorder) in his airway.
He was quickly transferred to intensive care and intubated due to the high risk of suffocation. A treatment plan was developed and chemotherapy started right away. It was the most terrifying moment of our lives.
Initially, the chemotherapy worked. The cancer cells began to die. But after three weeks, the lymphoma came back. It was absolutely devastating as his parents to watch his suffer again. Still, the doctors never gave up. They moved forward with a more aggressive chemotherapy plan. Unfortunately, that failed as well.
In the meantime, Adam had to undergo another surgery to receive a tracheostomy to keep his airway secure. This was another enormous challenge as we had to be trained to manage it ourselves. The responsibility was overwhelming, both emotionally and mentally exhausting.
Throughout it all, the medical team remained determined. They stayed in constant contact with specialists at Great Ormond Street Hospital in London and even reached out to experts abroad to help develop a new treatment plan. Working together, they created a unique approach — and it worked.
After several weeks, Adam’s cancer cells began to disappear. Even with that progress, we were scared to celebrate too soon. But by the grace of God, Adam was declared cancer free. In September, he rang the hospital bell to mark the end of his cancer journey, a day we will always remember and be forever grateful for.
Adam remained in the hospital from March until November due to the tracheostomy. We had to wait for a home care package that included around the clock nursing support. Just as everything was coming together and we were preparing to go home, Adam was decannulated, meaning his tracheostomy tube was removed. That was one of the happiest days of my life. For the first time in a long time, it felt like everything was going to be okay.
We returned home a few days later, but it was not all smooth sailing. His immune system was still incredibly weak, and there were ups and downs. But slowly, things began to stabilise. Adam needed a lot of support from physiotherapists. His muscles were so weakened he could not stand on his own. But with time and care, he regained his strength.
In September 2022, Adam started preschool. He continues his education with learning support, but the most wonderful part is that he gets to be with other children his age. Finally, he has the chance to enjoy a normal childhood.
Meeting Adam today, someone who did not know his story would never guess what he has been through. He is full of life, always running, smiling, talking nonstop. He has an incredibly strong character, but he is also deeply sensitive and can brighten even the darkest day. He is our sunshine, our inspiration, and proof that nothing is impossible.
I truly believe Adam has a guardian angel, perhaps even the one who donated his heart. I don’t know for sure… but I am endlessly grateful that he is here with us.
None of this journey would have been possible without the extraordinary care and dedication of the entire hospital team. The doctors, nurses, specialist nurses, cleaners, porters, canteen staff, and chaplains. Every single person played a vital role. The psychological support we received was invaluable, helping us cope through the darkest days.
Our entire cardiology team have been vital. In particular, specialist nurse Helene was nothing short of incredible. She has been with us since before Adam was born, supporting us through every crisis. She remembers more details than we do, and we are endlessly grateful for her presence. She is family to us, and everyone at the hospital loves her.
The support we received from everyone at CHI is something beyond words. They weren’t just staff, they were our lifeline. They are truly angels on Earth, and we will forever be grateful for the love, dignity, and hope they gave Adam and our family.
– Katarzyna, Adam’s mum.