Entering a Different World: A Mother's Experience of NICU and PICU

When you enter neonatal or paediatric intensive care, the world outside falls away. Life becomes the beeping of monitors, the smell of antiseptic and the rhythm of clinicians' footsteps. For a parent, time no longer flows in hours or days—it is measured in heartbeats, blood gases and test results. For our family, nothing prepared us for how powerless and yet how profoundly needed we would feel in those moments. We arrived as visitors, but soon learned that families are far more than that—they are partners, advocates and, at times, the only constant in a child's care. I can still remember the first time we walked into the neonatal intensive care unit (NICU). It was like stepping into another world—a place where hope and fear live side by side. I remember the brightness of the lights, the hum of the equipment and the overwhelming realisation that our lives had just changed forever. Those early days were a blur of medical language we did not understand, tubes and lines everywhere, and a sense that we had no control. Every hour, every decision, felt life-altering. But even in that first fog of fear, I realised something very quickly: as parents, we had to learn fast, because our voice was going to matter. We might not have been wearing scrubs, but we knew our child better than anyone. Living in a paediatric intensive care unit (PICU) or a NICU is like living between two worlds. You are surrounded by extraordinary expertise, but you are also surrounded by uncertainty. There were moments of deep kindness that I will never forget: a nurse who took the time to explain what each alarm meant so that I could stop holding my breath every time a monitor beeped; a consultant who crouched down to eye level when delivering difficult news, instead of speaking over us. But there were also moments when it felt like we were invisible. Conversations happened at the end of the bed, and decisions were made about our child without anyone turning to ask us what we thought. Those moments leave marks too. They taught me why families need to be at the heart of critical care—not just as visitors, but as respected members of the team. It took me a while to realise that I was not just a bystander in the unit. I was part of the care team. We know our children in ways no monitor or test can measure. We notice tiny changes—a flicker of discomfort, a different way of crying, the things only a parent who has spent hours watching can see. And when clinicians listened to that insight, it made a difference. I can think of times when a nurse would ask, ‘Does this look normal for your child?’ and that question alone helped avoid a bigger problem. It made me feel valued. It made me feel less powerless. The very best care was delivered when we worked together: families and healthcare professionals side by side, each bringing what we knew best. People often assume that once your child leaves PICU or NICU, life goes back to normal. The truth is, it never does. There is before intensive care, and there is after—and they are not the same. Even now, years later, there are sounds that can pull me right back into those early days: the rhythmic beeping of a machine, the squeak of a hospital trolley. Those of us who have sat by a bed for weeks on end carry those memories everywhere we go. The constant anxiety doesn't just disappear once you leave the unit. It follows you home. It changes how you sleep, how you plan your days, how you live your life. And for siblings and extended family, the impact is huge too. Families need support that recognises this—both during their stay in a NICU or a PICU and after they leave the hospital. What helped most during our time in intensive care was simple: being listened to. The professionals who made the biggest difference weren't the ones who always had answers—they were the ones who took the time to ask questions and to hear ours. They remembered that behind every bed was a family who was scared, exhausted and hoping for a sliver of humanity amid the machines. What could be better? More time and space for families to be heard. More emotional support, not just for the patient but for everyone holding vigil at their side. More recognition that our experience does not end at discharge. If hospitals could build stronger links with community support services, schools and mental health care, the transition home would be less lonely. Our experience changed me in ways I am still discovering. It is the reason I became involved in research and advocacy, working with community groups and healthcare professionals to try to improve the system for families who will come after us. If I could tell every nurse, doctor, therapist and researcher one thing, it would be this: Families of children in a NICU or PICU are not just visitors. They are the most constant presence in a child's life. Listen to them. Trust them. See them. Critical care will always be a place of incredible skill and science. But it is also a place of profound human connection. And that connection—between families and professionals—has the power to make all the difference. Beside your bed I learned to stay, Through endless nights & fragile day. A thousand beeps, a whispered prayer, The world stood still while I sat there. Machines can heal, but love can too, And so, I gave my strength to you. Though fear was near, hope never strayed, In every breath, our bond was made. The author declares no conflicts of interest. The data that support the findings of this study are available from the corresponding author upon reasonable request.