Pia’s Journey: A Mother’s Faith, A Hospital’s Care

Pia, the youngest of four children, was born as the younger twin in her mother Neža’s second twin pregnancy. From her very first days, she stood out — bright-eyed, quietly determined, and surrounded by the love of her busy family. Life at home in Slovenia was lively and joyful, until just two weeks before Pia’s first birthday, when everything changed with the discovery of a tumour in her heart. 

What followed was a journey across countries and through some of the most challenging moments a parent can face.  This is the story of Pia, as recounted by her mother, Neža, whose unwavering belief and love carried her daughter through a life-saving journey at Great Ormond Street Hospital (GOSH) in London. 

Would you keep believing, even if you were the only one who did? 

For me, the answer was yes.

At the end of January 2024, I had been watching Pia’s breathing closely for weeks. Her paediatrician had found nothing unusual, but my instincts told me something wasn’t right. Two days later, she began coughing more than usual, and her bright little eyes looked tired in a way I had never seen. Every instinct I had screamed that she needed urgent attention. 

Within hours, Pia was admitted to intensive care in Ljubljana, Slovenia, and placed in a medically induced coma. A short procedure brought devastating news: a large tumour on her heart- the biggest her doctors had ever seen. It was a miracle she was alive. In that moment, my world collapsed. 

Further tests showed her condition was complex and surgery was urgently needed. Her local medical team did everything possible for her, and after two weeks, thanks to the extraordinary efforts of her Slovenian team, we were offered a transfer to Great Ormond Street Hospital, a world leader in children’s heart care. That night, lying in bed with my three other children, I felt fear and uncertainty, but also a fragile hope. We were taking her to the best possible place. 

The journey was daunting: a private medical flight, Pia was in a coma, and my husband already in London preparing for our arrival. 

When we landed on 12 February 2024, we were admitted straight to the Flamingo Ward in the Cardiac Intensive Care Unit. I remember feeling overwhelmed, in a new country, far from my other children, terrified of what lay ahead. But stepping into her cubicle, I felt an unexpected calm. I saw my brave fighter safe in bed, a nurse by her side, and a cardiologist carrying out an echocardiogram. The professionalism and focus were instantly reassuring. 

It was here I first met Dr Sachin Khambadkone, Head of Cardiology at GOSH. He explained that while GOSH had treated similar cases, Pia’s condition was unique, and surgery would need to happen soon. The first step would be a biopsy to understand the tumour type. 

 “I met Pia’s parents at a very difficult time for them. Pia was very sick and her diagnosis of a tumour in the heart is a very rare condition in children. I was able to reassure the family that GOSH was the right place for them with the expertise we had in the diagnosis and treatment of such a rare condition,” said Dr Sachin Khambadkone. 

Reflecting on Pia’s care, he added: “The teamwork between the Cardiac Intensive Care, Cardiology, Cardiac Anaesthesia, Cardiac Surgery and the expert advice from Oncology and Pathology departments was exceptional. The nursing team, who were in direct contact with the family, formed very strong bonds with Pia and her parents and guided them throughout their stay. Pia herself showed incredible strength and, with the support of her parents, made a very good recovery.” 

During those long hours while Pia slept, I came to know the incredible staff. I've always been a talker, and luckily, many of them were too.  

Those conversations brought me comfort and a sense of belonging. At GOSH, people from all over the world come together with one shared purpose: to care for the children. And you can feel that unity in every interaction. 

In the days before Pia’s biopsy, she was surrounded by extraordinary care. Nurses stayed by her side around the clock, and I could visit any time. Even when I stepped out, I was given an extension number so I could call directly into her room and speak to the nurse on duty, a lifeline in an overwhelming world. 

I was a bundle of nerves, tears streaming as anaesthetists and surgeons calmly explained every step. Mona and Maya, her nurses, guided her to the operating room and kept me updated. Outside her window, a Peter Pan light display twinkled, a small but magical reminder of the thoughtfulness here. 

Her first birthday became a celebration despite everything. Her cubicle was decorated with “Happy Birthday” signs and gifts, and we shared a FaceTime call with her twin brother and sisters back home. It broke my heart but reminded me of the love waiting for her. Off-duty nurses joined in to sing, and Emma, the night-shift nurse, even sang during a midnight nappy change, so Pia had two birthday songs. It was overwhelming and beautiful, a testament to the kindness and dedication that defined her care. 

After nearly three weeks on a ventilator, Dr Mark Hayden extubated her, helped her take her first breaths without the ventilator. Holding Pia without tubes, watching her breathe on her own, was priceless. We moved to the Bear Ward, where gentle strolls, playroom visits, and cuddles with therapy dogs slowly restored moments of joy, each one a reminder of resilience and the extraordinary care caring us through the storm. 

The morning of Pia’s surgery was filled with nerves and overwhelming emotion. We met the surgical team, discussed the risks, and signed the papers. I tried to hold it together for her, but inside I was breaking. When Dr Martin Kostolny arrived, his calm, serious presence instantly reassured us, we knew she was in the safest hands. 

My husband carried her to theatre, where she was gently put to sleep. We kissed her and whispered that she was a born winner. Watching her leave was one of the hardest moments of my life. 

Three hours later, my phone rang. It was Dr Kostolny. His voice was steady and full of relief: the surgery had been a complete success. Hugging my husband, I felt a wave of gratitude, disbelief, and joy. 

When we saw Pia again, she was sleeping peacefully, surrounded by tubes and medications. The nurses patiently explained each step of her recovery, from physiotherapy and naps to visits from therapy dogs. Every moment reflected the extraordinary skill and compassion at GOSH — proof that behind every procedure is a team devoted to children and their families. 

Reflecting on the surgery, Dr Martin Kostolny shared his perspective on the challenges and the relief of seeing Pia recover: 

Pia’s case was unusual — both because of her early presentation and the size and appearance of the tumour on her echocardiogram. Our multidisciplinary team used detailed imaging to plan the surgical approach. At first, it wasn’t clear whether we could remove the mass completely. During surgery it became apparent that this was possible, but I still wondered how her heart would cope with the large space left behind. Seeing how smoothly her recovery began was an enormous relief. Pia’s parents stayed so positive throughout her hospital stay — for me, that was a profound source of inspiration. 

Our month at GOSH redefined life for us. We experienced world-class expertise, but also a warmth and humanity that made all the difference. The nurses celebrated our small victories, stood with us in the hardest moments, and treated Pia not just as a patient, but as a little girl with her own story. 

My message to other families is this: believe, even if you are the only one who does. Hope can carry you further than you think, and the right care team can make the impossible possible. 

My message to my children: We are beyond grateful that you were chosen to be ours. You are stronger than you think, braver than you believe, and loved more than you will ever know.