In July 2015, Rosie was diagnosed with restrictive cardiomyopathy, a condition that affects one in a million children. Her mother, Sara, was told that her daughter had severe heart failure and would need a heart transplant within a year if she were to survive.
Life in ICU
During a routine check-up at Great Ormond Street Hospital (GOSH), Rosie’s condition worsened. She was admitted into intensive care and within three days, she underwent the operation to have a mechanical heart. From that moment onwards, Rosie’s only hope was to get a heart transplant.
Rosie spent 160 days on intensive care, fighting for her life as she waited for a transplant – the longer the wait, the more risk for Rosie.
ICU is somewhere no parent ever wants to find themselves, and Sara found the experience deeply affecting. “The ward is so silent. You don’t hear the crying, the laughter, or the noises that you would expect to hear on a children’s ward. What you do hear, are the constant bleeps of the machines.
Juliet Le Breuilly was a nurse in the Cardiac Intensive Care Unit (CICU) when Rosie first arrived at GOSH before becoming the Family Liaison Sister for the ward. During their long stay, Juliet (pictured below) sought to use her knowledge as a nurse to reassure Rosie’s family. “I am able to translate a lot of the information and technical speak for families,” explains Juliet. “It’s really important to me that families are kept together as much as possible and I think a lot of that is about providing information and choices.”
The CICU team also sought to involve Rosie’s family as much as possible in her day-to-day care. “For Rosie’s mum, it was being a part of things like dressing, washing, brushing her teeth – the little things like that,” says Juliet. “Everyone thinks staying at GOSH must be hi-tech stuff, when actually it’s often about what you would do at home.”
One in a million
During her time in hospital, Rosie became a much-loved member of the GOSH family. “My lasting memory of Rosie’s stay on CICU is her feistiness, and her determination, and her love of Peppa Pig!” recalls Juliet. “Even when she was sedated and on a ventilator, you’d see little flickers of her character. A foot wriggle or a wiggle of the head – she’s a really strong little girl.”
The team remember her love of music, crisps and Julia Donaldson books – particularly Stickman. “When we started lessons, Rosie wasn’t using her hands” says Brigid Coyle-Kelleher (below), her teacher from the Hospital School. “For the first couple of weeks, I would bring a Julia Donaldson book every day and we would read those and do a short activity based on that afterwards. For the first few lessons, she would listen to the stories – then slowly she began to take her hands out from under the covers and get involved.”
Rosie’s cardiorespiratory physio Emma Shkurka adapted the ward around Rosie to suit her needs, with a special chair to make movement easier and even a basketball hoop to keep her arms active. “When we used to go round the ward, they used to call her Queen Rosie or Princess Rosie because her chair was like a throne!” says Emma. “Every time, it’d be like ‘Oh, Queen Rosie is coming’, a little wave – one of the play assistants even made her a crown!”
Keeping hold of family life
With her husband, Barry, Sara juggled looking after Rosie and her other two children, Grace, six, and George, eight.
Sara said: “That was the hardest thing. If Rosie was my only child, I could focus solely on her but I have two others. They’re not poorly, but they still need their mum. I missed them like crazy, they missed me, and that was really, really hard. You just want to clone yourself and be in two places at once and you can’t.”.
During school holidays, Rosie’s siblings Grace and George (below, with Rosie and Sara) often visited Brigid and the team at the Hospital School’s activity centre. They also went to the gym with Rosie and Emma, helping to entertain their sister and keep her laughing. “Not one family on the ward is the same,” says Juliet. “Everyone is very different, so we are just lucky that we are able to tailor the support to what they need.”
Finding a donor
Finally, the Day family received the call that a heart was available and, after six months in intensive care and around a year after she was first diagnosed, Rosie got a transplant.
Thinking of the family who made the decision to donate their child’s heart, Sara said: “Thank you will never be enough. We will be forever grateful to them for making such a brave, selfless decision in their darkest hour. They have given Rosie a second chance at life and we are so incredibly grateful."
Sara will always treasure the magical day when Rosie came home for the first time. “After so long in hospital, we weren't sure that Rosie would remember home,” says Sara. “We pulled up outside our house to welcome home banners. Rosie had a huge smile on her face. She was so thrilled to be home, as were we – she clearly remembered it. She slept so well back in her own bed; it was wonderful putting her to sleep that night and having the whole family back together under one roof.”
Rosie’s road to recovery
Rosie is now at home and delighted to be with her brother and sister. She continues to work hard with physiotherapists to improve her strength.
She may be off the ward, but the GOSH team are still playing their part. Brigid and the school will use online tools to inform Rosie’s future teachers about the content of her lessons in hospital, while Emma and the physio team held several handover sessions with the staff from the rehabilitation centre to ensure the smoothest transition of care possible.
While there is still a long way to go, Rosie is doing well. “Thankfully, now Rosie has her transplant, we can focus on rehab. Rosie’s come back from things when people didn’t think she would. She’s a feisty personality and that’s what’s got her through.”
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