Evie Evans was in respiratory failure when she was transferred to Cambridge University Hospital’s paediatric intensive care from her local hospital in July. She was sedated and put on a ventilator to take over her breathing.
It was unclear why she wasn’t recovering from a respiratory infection and why her oxygen levels were so low. Evie was so seriously unwell that doctors discussed a DNR order with her parents. She stayed on a ventilator for 67 days and was in hospital for 98 days. This is the story of her care, her recovery and a promise that involved Beyonce…
At 13-years-old, Evie is a typical teenager and full of sass, according to her Mum, Sara Evans. Sara says Evie loves baking, dancing, drama club and chatting. She has two sisters, a dog called Roger, and lives with her family in Essex.
Evie loves her weekly boxing sessions and also plays rugby. At the beginning of summer, she got a cold, which quickly got worse. Sara called 111 and Evie was transferred to intensive care at Addenbrooke’s, transported by the hospital’s specialist paediatric ambulance service, PaNDR.
Sara said:
It all happened very quickly. It was a massive, horrendous rollercoaster.
Sara Evans
Sara and husband Gavin were given a room at Acorn House, a place for families with children staying at CUH to live in. Evie’s oxygen level remained low despite all efforts of the paediatric intensive care team. As the stay in intensive care continued, Sara put together a playlist of Evie’s favourite music and wrote a three-page document that told the people caring for her daughter what she was like.
“I am very acerbic according to my Mum, she says I could cut someone in half with my tongue. My tongue isn’t big, my jaw is short, because I have Down’s Syndrome. I don’t know what Down’s Syndrome is. I don’t even know I have it. I am just me. I’m independent, funny, loving, and feel your pain. I have a lot of empathy, and will give you the biggest hug if you are in pain.”
Reading the document helped the intensive care team get to know Evie, according to paediatric consultant Bryce Lothian, who was assigned to lead Evie’s care.
After weeks of ventilation, Evie’s condition started to slowly improve. The CUH paediatric physiotherapy team also started to work with Evie when she began to stabilise; moving her arms and legs while she was sedated to ensure her muscles didn’t become too stiff or sore.
In early September, Evie had improved enough to wean her off the ventilator. It was a difficult decision; she was very weak from the treatment and there was a risk the tube would have to be reinserted if she couldn’t breathe for herself.
Dr Bryce Lothian said:
It is always a tricky 24 - 48 hours after extubation. But, after two days we knew we were on the right side of the illness. It was a lot quicker than expected, taking Evie completely off the ventilator. She did very well considering how weak her respiratory system was; it was a great success.
Dr Bryce Lothian
The focus was then on Evie’s physical rehabilitation. Having been in a coma for so long, Evie had to relearn how to move, support herself and walk. Helen Starace, Addenbrooke’s lead paediatric physiotherapist and her team led targeted sessions, which were only ten minutes to start with. They discovered what motivated Evie and made an individual plan to give her exercises she would enjoy.
Helen said
With children, we need rehab to be like they are just having fun and not doing exercise. We played games with Evie; throwing sticky balls at targets and giving her boxing gloves. Addenbrooke’s pet therapy dog Poppy played a key role, with Evie throwing a ball to her. We worked up to using a tilt table to enable Evie to stand and a ladder to help her pull herself up and turn 90 degrees. After four weeks we were able to start taking her to the physio gym.
Helen Starace
It was at a gym session in early October when physio Jonny promised the team would perform a dance for Evie when she took her first steps. Single Ladies by Beyoncé was playing from Evie’s gym playlist when Jonny made the promise, so Evie thought it would be hilarious to make the team perform Beyoncé’s iconic moves.
Evie improved enough to leave intensive care for the high dependency unit. The plan for her to go home took shape and Sara and Gavin converted a room in their house downstairs for Evie’s return.
Helen said the team started to realise they would have to actually fulfil Jonny’s promise. She said: "Evie took her first steps using the bars on Friday 13th October and the next stage was to walk with a frame. In preparation for the upcoming dance routine, the team watched a video to learn Beyoncé’s moves and we rehearsed together twice. I might have practiced at home a little too!
When Evie walked with the frame for the first time, it was an incredible moment in her recovery. The next day she came to the gym as normal with her Dad. She was given a cheerleader pompom, the music started and we just went for it. It’s the first time we’ve ever done anything like this and we all secretly enjoyed it! Evie had worked so hard, we were determined to do it. We were on such a high afterwards.
Helen Starace
Evie was delighted by the performance. Sara said:
The physio team are fantastic. They have always been so kind and empathetic in their care. Every time they worked with Evie they were really tuned into her and were instrumental in her recovery. She worked harder for them.
Sara Evans
After four months in hospital, Evie was discharged. Alongside a care package of community physiotherapy, Evie’s boxing trainer, who she has been working with since she was three years old, will be resuming their weekly sessions. Evie is also looking forward to re-joining her rugby family, who supported her with get-well videos when she was in hospital, including one from London rugby club, Saracens. The organisation International Mixed Ability Sports also sent a video of support.
Helen said:
Evie’s journey was difficult and very long. She deserved a special thank you and her hard work is testament to her character. Our ultimate goal is always for a patient to go home, so we are really happy for her and her family.
Helen Starace
Of her daughter, Sara wrote in the document she gave to the intensive care team: “when you meet me, you will understand how special and unique I am… everyone I meet, I give a little gift to. The gift of happiness. Please bear with me, I will come back, but I will do it the Evie way.”
Currently paediatric physiotherapy takes place in gyms designed for adults in the main Cambridge University Hospital site. Cambridge Children’s Hospital will have dedicated therapy spaces for children and young people, making it easier to provide specific, tailored therapies in calm, age-appropriate environments. The hospital will have two rehabilitation gyms, occupational therapy, music therapy and therapeutic play rooms, as well as terraces, courtyard gardens and a garden, which provide outdoor spaces with a variety of textures, surfaces, sights and sounds that can be incorporated in and enhance therapeutic activities. The hospital, which will serve the east of England and will be a UK first to integrate mental and physical healthcare alongside research, had its Outline Business Case approved in principle in October. Read more about the vision of the hospital and our plans on the Cambridge Children’s website (opens in a new tab).
