Big sister Esmae to the rescue after baby sister Evie battles mystery condition | News

Our patients and families are some of the strongest people we encounter and one family from Kidderminster exemplified their sheer bravery when, at just three days old, baby Evie stopped breathing.

Dad Alex, quickly performed CPR on little Evie, hoping that she would make it to the hospital in time for urgent care. She survived and, after many months of care and treatment, she was well enough to go home with support from our nutritional care team.

To coincide with Home Artificial Nurtition week, mum Jasmine and Dad Alex have shared their story about their long journey to keep Evie home with big sister Esmae. Evie is now 15 months old and has had more than 15 operations due to intestinal failure – the cause of the condition remains a mystery to both the family and to clinicians.

Evie has also undergone sedation due to the severity of her condition at our Paediatric Intensive Care Unit (PICU) and now uses a colostomy bag due to the nature of her illness. The family have received support from our Nutritional Care and multidisciplinary teams on how to make Evie’s quality of life better, so that she can return home safely.

Alex said: “We were unsure if she’d make it through and she spent three and a half weeks in PICU. Once we were able to get Evie home, she had to go back only nine days later because she’d picked up an infection. She stabilised in the summer, and we were able to have her back home properly – it was all symptoms without causation in the beginning. We’re still unsure what the cause was behind this, but seeing her improvement has really put things into perspective for us. It's not about the diagnosis, it’s about taking our time and appreciating every day we have. It hasn’t been easy. It’s all about attitude, you have to keep going regardless of the challenges.”

After a period of time in hospital Evie was referred to our Nutritional Care and multidisciplinary teams – including Gastroenterology team, Dietitians and pharmacists - to help train, support and facilitate Evie’s discharge home on a treatment called Parenteral Nutrition. This delivers vital fluids and nutrients directly into her bloodstream via her central venous catheter.

Once Evie was referred to our service, our team completed training daily with parents to ensure they developed the knowledge and skills required to carry out treatment at home. There needs to be a high level of care to ensure safe delivery of her complex treatment and to avoid complications. Evie’s parents took all this on board and were dedicated to their training and diligent in the care they provided to their daughter.

Gemma Kavanagh, Lead Nurse for Nutritional Care said: “We were involved with liaising with the allocated home care provider to arrange deliveries of treatment and all the equipment that is required to deliver this at home, including deliveries of big bulky items like a medical fridge, pumps and drip stands. It was also important to establish community support for the family to keep Evie safe and well at home. Once families go home the support of Nutritional Care and the Nutrition MDT does not stop there, we are all always there, reviewing in clinic or on the end of a phone or an email if families need advice and support.”

Mum Jasmine said: “The Nutritional Care team have been amazing throughout our care, they have supported us every step of the way, from our initial training in the hospital, to seeing us every time we come back in with anything from appointments to ‘unplanned visits’. With our initial training which took around two months to complete, they showed us everything we had to learn to provide the care to Evie, to provide the best safe way to administer her parental nutrition overnight.

“Not only did they provide a high level of care they also became part of our BCH family. Each time we go for regular visits to the hospital or admission stays we always see one another which they can’t believe how much Evie has grown since the last seeing! We can’t thank the team enough they are one of the many reasons we are back home watching both our two girls grow up building such special bonds between them which they so deeply missed out on when Evie was first born.

“When we started our Parental Nutrition journey we were absolutely petrified as her life is quite literally in our hands, we need to make sure we do everything right, we need to make sure we provide the care in such a sterile way otherwise it could be potentially life threatening but we wouldn’t change it for the world. It has made our lives complete providing Evie’s care within the comfort of our own home knowing if any problems occur the Nutritional Care team are there to help us out. Everyone we’ve met on our BCH journey have been so lovely, the support at the Children’s Hospital has been really amazing and we’re happy to have Evie home with her big sister Esmae.”

Artificial nutrition allows patients to receive nutrition when they are either not able to take adequate amounts by mouth or are unable able absorb enough from feed to sustain adequate nutrition and growth. Being able to provide home artificial nutrition and train patients and their families to deliver this care at home allows the patients to be discharged from hospital, allowing flexibility and independence away from the hospital. Their child is only ‘different’ in the way they feed, we want to encourage patients to live life as normal life as possible without the constraints of their illness and treatment.

Gemma Kavanagh added: “We are privileged to be able to work alongside the multidisciplinary team to support patients like Evie and their families, both practically and emotionally to deliver their treatment at home. Being asked to take your child home on artificial nutrition is daunting, it is natural for families to feel worried and anxious, but we are all here to support them along the way. Having a child at home on artificial nutrition affects every patient and family in different ways - we want to encourage patients to live a good quality life, as normal as possible, to go to nursery, school or college and to have fun! It is an absolute pleasure to support our patients and their families and to be part of their journey. We learn so much from them which helps to mould our future care and the service we provide.”

As for now, Evie is thriving at home alongside five-year-old Esmae – who now plans to become a doctor when she’s older. Mum Jasmine said: “It’s really great she loves playing with her older sister Esmae who we’ve taught about colostomy and Evie’s stoma. Evie loves teaching Esmae about how to use her equipment that the Nutritional Care team has supported us with. Everyone we’ve met has been lovely, the support at the Children’s Hospital has been really good and we’re happy to have Evie home with her big sister.”

Dad Alex said: “I can imagine Esmae working within health care, she’s been brilliant and is a fantastic big sister.”