“Kobi The Brave”: TikTok Mum Chronicles Her Son’s Hospital Fight — Helping Other Parents from the Bedside

Mother uses TikTok to share practical help and hope from her son’s hospital bedside

Kirsty Grandison, 35, is documenting life caring for her son Kobi on TikTok to support other parents navigating long hospital stays. Kobi was born 10 weeks early at the Royal Hospital for Children and Young People in Edinburgh on 17 July 2024, weighing 3lb 3oz. What began as a fragile neonatal admission quickly became a prolonged and traumatic battle with serious complications.

On his first night Kobi suffered a collapsed lung and stopped breathing. He later experienced a grade four brain bleed — the most severe type — and was given a grim prognosis. Against the odds the family were able to hold him eight days later, a moment they describe as a miracle, but the emergency was only the start of ongoing challenges.

“He was having up to 10 seizures a day. We were always panicked, always so scared for him. We still are,”

— Kirsty Grandison

Kobi went on to develop meningitis and was diagnosed with hydrocephalus — a dangerous build-up of fluid on the brain that required surgical insertion of a shunt. The family report Kobi has undergone around 16–17 operations in total (the article references 17 operations overall and 16 since the hydrocephalus diagnosis). Each surgery has been a fresh source of worry for his parents: “That’s 16 times we’ve handed him over, not knowing if he'd come back,” Kirsty says.

Both Kirsty (formerly a carer) and her partner Daniel Crolla (a bus driver) have left paid work to care for Kobi full time. They live in Prestonpans, East Lothian, with their blended family and take turns staying in hospital around the clock.

Practical videos and peer support

Kirsty’s TikTok account, Kobi The Brave, has around 34,000 followers and receives up to 40 private messages a day. Her videos mix practical how-tos with honest reflections: she shows adapted clothing that fits around feeding tubes, how to clean a feeding peg, how to set up a feeding pump, medication routines and tips for changing hospital bedding. Her aim is both practical — helping parents learn necessary skills — and emotional, offering solidarity and hope.

“I get messages from other parents in neonatal saying my videos are getting them through and how it's making them not give up hope because they have seen how far Kobi has come,” Kirsty says. “I want to take all these followers on this journey as I know how many it can help.”

Exhaustion, resilience and hopes for home

Kirsty describes caring for Kobi as the “greatest privilege in the world” but also says it is exhausting, relentless and lonely. The family have grieved the life they expected and miss ordinary moments many take for granted.

“We used to have little bits of ourselves outside all this — football, the gym. Now, we go days without having a shower. Sometimes, you wish someone would ask, ‘But how are you?’”

— Kirsty Grandison

As Christmas approaches the family hope to have their “cheeky and determined” son at home, away from the machines and clinical smells of hospital — though they know it will mean living with ongoing anxiety about sudden changes in his condition. “His head can double in size instantaneously and we have to rush him back to hospital,” Daniel says. “It's very traumatic and we are constantly in a fight-or-flight mode. But when the fear feels overwhelming, his smile pulls us back.”

The Edinburgh Children’s Hospital Charity is supporting the family with some of the hidden costs of long-term hospital life. Pippa Johnston, the charity’s deputy chief executive, praised the family’s courage and reminded the public that many families spend festive periods in hospital and should not feel alone: “Alongside our friends in the NHS, we'll be there to bring reassurance, comfort and unexpected moments of joy when they're needed most.”

Why this matters: Kirsty’s videos combine practical instruction with emotional honesty, helping other parents feel less isolated and learn hands-on skills for caring for medically complex children. The story highlights the emotional, financial and practical toll of long-term pediatric hospital care and the role of peer support and charities in helping families through it.