Cooper's Story - Little Heroes

Cooper is 2 years old and full of personality. He loves being outdoors, whether that’s playing outside or going for little walks. He also really enjoys watching his favourite cartoons and having some downtime at home.

He’s a very curious and determined little boy who loves exploring the world around him. Despite everything he’s been through, he’s such a happy, loving child and brings so much joy and laughter into our lives every single day.

Cooper was diagnosed with posterior urethral valves  resulting  in chronic kidney disease at my 20-week pregnancy scan. From that point, everything changed. We were given very little hope and were even counselled and offered a medical termination, which was incredibly difficult and heartbreaking to process as parents.

Cooper was then born prematurely at 26 weeks and was stage 5 CKD. He spent the first 116 days of his life in the NICU at the Royal Belfast Hospital for Sick Children. It was an extremely emotional and overwhelming time, filled with fear and uncertainty, but also moments of strength we didn’t know we had.

Since then, Cooper has been on a long journey with his health and continues to so with being on home perinatal dialysis 7 nights a week for 11 hours at a time, he requires a kidney transplant in the future but still has some growing to do. But from the very beginning he has shown just how strong and determined he is.

One of the biggest challenges we faced when Cooper was admitted to the Royal Belfast Hospital for Sick Children was the uncertainty. Not knowing what each day would bring, or what his future might look like, was incredibly difficult to cope with.

Seeing your baby so tiny and fragile, surrounded by machines, is something no parent can ever truly prepare for. There was a constant mix of fear, worry, and emotional exhaustion, especially over such a long period of time.

Another challenge was the feeling of helplessness. As a parent, all you want to do is protect your child, but in that environment, so much is out of your control.

At the same time, we had to find strength every day to keep going, to stay positive for Cooper, and to get through each hurdle as it came.

The staff at the Royal Belfast Hospital for Sick Children made such a difference to our experience during Cooper’s treatment and still do to this day. From the very beginning, they showed so much care, compassion and understanding, not just towards Cooper but towards us as a family as well.

The atmosphere at the Royal Belfast Hospital for Sick Children is a mix of professionalism, care, and warmth. Even though it can be an incredibly stressful and emotional environment, the staff work so hard to make it as welcoming and supportive as possible for families like ours.

There is a real sense of teamwork and understanding, which helps us feel less alone and more able to cope with each day. Small things, like the kindness shown by nurses, the reassurance from doctors, and the way the hospital tries to make the space family-friendly, makes a huge difference.

Knowing that Cooper was in such a dedicated and caring environment gave us comfort and strength and helped our family navigate a very challenging time together.

 While at the Royal Belfast Hospital for Sick Children, Cooper had surgery to have central lines, a valve ablation, and a perinatal dialysis catheter. Being so tiny made each procedure very daunting.

The medical team were amazing, explaining everything clearly, preparing both Cooper and us, and comforting him during procedures. Their care and support made these challenging experiences more manageable and gave us confidence that Cooper was in the best hands.

Our renal nurse, Hazel, is amazing, always friendly, kind, and going above and beyond to support Cooper and our family, always only a phone call away. She, along with his nephrologist consultants the NICU nurses and doctors, made such a difference, helping Cooper feel as comfortable as possible and reassuring us every step of the way.

The hospital provided support not just for Cooper but for our whole family. The staff were very understanding of how stressful the situation was for his big sister and made efforts to include her, reassure her, and help her feel safe.

Cooper’s time in the hospital had a huge impact on our family, both emotionally and practically. Emotionally, it was incredibly stressful and overwhelming seeing him so tiny and fragile, facing uncertainty about his health, and living day-to-day in fear for him took a big toll.

Practically, our routines  have completely changed. We spend long hours at the hospital and had to balance visits with caring for his sister and manage life at home while supporting Cooper’s care.

The hospital offered several services and resources that helped make our time there more manageable. The family-friendly environment, support from nurses like Hazel, and clear communication from Cooper’s nephrologist consultants made a huge difference.

Even small things, like updates on his progress, and opportunities for siblings to be involved, helped us feel included and supported. These efforts made an incredibly stressful time a little easier to cope with and reminded us that we weren’t alone.

We had access to psychological and emotional support services at the hospital, and they were incredibly helpful. Talking to trained professionals gave us a safe space to share our fears, worries, and frustrations, which helped us manage the emotional strain of Cooper’s treatment.

We were able to connect with support programs and groups through the hospital, which made a real difference. Being able to speak with other parents going through similar experiences helped us feel less alone and gave us hope and encouragement during very challenging times. Even just meeting parents on the ward and Sharing advice, hearing stories really helped us cope. 

The team at Little Heroes NI were incredible in supporting both Cooper and our family. They offered practical help, emotional support, and a sense of comfort during an incredibly difficult time.

Knowing that we had people looking out for us, providing resources, and checking in on us made a huge difference. Their kindness and understanding helped us feel less alone and gave us strength to keep going, knowing that Cooper was surrounded by people who truly cared.

Looking back, and still currently the care and environment at the Royal Belfast Hospital for Sick Children has played a huge role in Cooper’s health. The staff’s expertise, kindness, and constant support helped him feel safe and comforted, even during the most difficult procedures.

The family-friendly environment, combined with clear communication from his doctors and nurses, gave us confidence and reassurance as parents. All of this helped Cooper stay as calm and happy as possible, and it gave our whole family hope and strength throughout his treatment .

To other parents facing a similar situation at the Royal Belfast Hospital for Sick Children, I would say: you are not alone. The hospital staff are incredible, compassionate, skilled, and genuinely dedicated to supporting both your child and your family.

It’s okay to feel scared, overwhelmed, and emotional, it’s a very challenging journey. Lean on the staff, ask questions, and accept the support offered. 

Small gestures of kindness, clear communication, and emotional support make a huge difference. Most importantly, hold onto hope and celebrate the little victories, because even in the toughest times, your child’s strength and resilience will shine through.

One memory that stands out is the first time Cooper was able to go home after his long stay. Seeing him leave the hospital, knowing how far he had come, was incredibly emotional and comforting.

I also remember the small moments when the nurses would reassure us and comfort Cooper during procedures. Those acts of kindness like holding him, talking to him gently, and celebrating his little milestones all made such a difference and reminded us that we weren’t alone in this journey. 

Since Cooper’s time at the Royal Belfast Hospital for Sick Children, my perspective on healthcare, family, and community has changed profoundly. I have a deep appreciation for the skill, dedication, and compassion of healthcare professionals, and how much their support can impact families during the hardest times.

I’ve also realised how important family and community support is—having people who care, listen, and offer help makes an unimaginable journey a little more bearable. 

My advice to families going through similar challenges at the Royal Belfast Hospital for Sick Children would be: take things one day at a time and don’t be afraid to ask for help. The staff are there to support you and your child every step of the way.

Lean on each other as a family, accept emotional support when it’s offered, and celebrate even the smallest milestones. It’s normal to feel scared and overwhelmed, but know that your child’s strength and resilience, combined with the care of the hospital team, can help you get through the toughest moments.

Little Heroes NI can continue to support families like ours by providing both practical and emotional support during such a difficult time. Even small gestures—like checking in, offering resources, or providing moments of comfort—make a huge difference.

Programs that connect families, offer guidance, and help children feel supported in hospital or at home are incredibly valuable. Simply knowing there’s a caring organisation looking out for you can give families strength, hope, and reassurance when they need it most.

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