Brave mum shares her baby daughter's stroke story for Stroke Awareness Month

A Kirkcaldy mum-of-three has opened up about her youngest child who had a stroke just hours after being born to highlight that stroke can happen at any age and raise awareness of the Stroke Association’s support for young families.

Around 400 children have a stroke in the UK every year. But Kimberley Sim, 34, from Kirkcaldy and her husband, John, thought they were alone in the events that unfolded at Victoria Hospital in Fife last May.

Mum to eight-year-old Thomas and two-year-old Arthur, Kimberley had a planned caesarean section to bring baby Eleanor into the world. However, just moments after being born Eleanor was struggling to breathe and rushed to the neonatal unit.

Kimberley said: “I tried to remain calm, but I remember longing to hold my baby girl and believing she was in the safest hands so would soon be back with me.”

Doctors reassured the family she was doing well and that they hoped she would be okay by the following morning. However, the next day Kimberley noticed that Eleanor’s hand was twitching, followed by her foot, and always on one side of her tiny body.

She said: “Eleanor was otherwise lying motionless, not opening her eyes, stretching or wriggling like a newborn baby should. I remember someone saying they thought she was having seizures, and it just didn’t compute in my head - babies don’t have strokes or seizures. That’s something you associate with older people.”

Within hours, Eleanor was moved to intensive care as doctors fought to stop the constant seizures. Once she was stable enough, she had an MRI scan with doctors delivering the devastating news that the daughter they had longed for had experienced a stroke.

Eleanor spent two further weeks in hospital before being discharged back home. Yet, fear and uncertainty filled Kimberley and John’s every waking moment in what should otherwise have been a happy time. Kimberley says the emotional toll has been immense, particularly as they felt so alone in their struggles.

She said: “You’re given this huge diagnosis and then suddenly you’re expected to just carry on with life. It all felt very surreal, and although we were able to find helpful support through the Stroke Association’s online resources, at the time we felt overwhelmed and unsure where to turn specifically around neonatal stroke.”

Despite the uncertainty, Kimberley and John are fiercely hopeful and proud of their daughter who they describe as “beautiful, confident and so determined.” Kimberley beams that, although she is still under medical supervision, Eleanor is currently hitting her milestones and continues to amaze everyone around her.

The family is looking forward to celebrating her first birthday on 30th May with a small family gathering and a very special cake featuring purple stroke awareness ribbon. A week later, they will head off on a family holiday to make happy new memories around the anniversary of Eleanor’s diagnosis.

Kimberley saw Stroke Awareness Month in May as the perfect opportunity to turn the family’s trauma into something positive, saying: “If sharing our story helps even one family feel seen or recognise symptoms sooner, then it’s worth it.”

The Fife family has been campaigning to raise funds for vital stroke services, including the Stroke Association’s childhood stroke support team. Kim is inviting family, friends and the more than 8,000 followers of the Fife Family Focus Facebook page she set up, to forego coffee and pastries this month and donate to her Just Giving page to support the cause.

Kimberley added: “Eleanor is our little miracle. We can’t change what happened, but we can use our experience to raise awareness and hopefully create something positive from it.”

Stroke is a leading cause of disability in the UK, and when it happens in childhood it can have a lifelong impact on the child and their loved ones. A stroke can affect how a child moves, speaks, sees, and swallows. It can also affect learning, memory, behaviour, and mood. Some children have visible physical disabilities, such as reduced movement, while others experience hidden effects such as fatigue, cognitive difficulties, emotional challenges, or pain.

John Watson, Associate Director for the Stroke Association in Scotland, said: “Eleanor’s story pulls the plight of child stroke survivors into sharp focus. Strokes in babies are very rare, but they do happen, and we are enormously grateful to Kimberley for bravely opening up to show the unimaginable impact of childhood stroke, but also where help – and hope - is available.

“Early diagnosis and access to specialist stroke care are vital. With the right rehabilitation, support for families, and planning for school and beyond, children can be supported to rebuild their lives after stroke.”

The funds raised during Stroke Awareness Month will help stroke survivors to find strength through the Stroke Association’s specialist services, and fund pioneering stroke research that can improve prevention, treatment and care.

The Stroke Association’s Childhood Stroke Support Team, which provides information and advice for anyone affected by childhood stroke, can be contacted at Childhood stroke | Stroke Association

The Stroke Association is Scotland’s leading stroke specific charity, providing lifelong support for all stroke survivors and their families. It raises awareness of stroke, funds vital scientific research, and campaigns to provide the best care and support for everyone affected by stroke.