Jessica is three years-old and lives in Cambridge with her mum Karen and dad David.
Jessie, as she’s known by her family, was born with only a left lung and a condition called Dextrocardia meaning her heart is positioned on the right side of her body – both of which were diagnosed during Karen’s pregnancy at her 20 week scan. It was expected that Jessie would be vulnerable to colds, however at just four months old she began to suffer from viral chest infections so severe she was admitted to hospital as an emergency on several occasions. As a result, at six months old she spent two months in Addenbrooke’s hospital. Jessie struggled to gain weight during her early life and was fully tube fed during her time in hospital. It was during this stay they discovered she also had a narrowing of the trachea known as Tracheal Stenosis.
Jessie was referred to Great Ormond Street Hospital and it was hoped her trachea would correct itself as she grew. Unfortunately Jessie continued to struggle when she had minor colds, and didn’t have the strength to walk until she was more than two and a half years-old. After further tests Jessie underwent a slide tracheoplasty to widen her airway in March 2015.
Karen and David were made aware of EACH and have been receiving care and support at our Milton hospice since September 2015. Jessie attends the hospice for short-break care meaning her parents can have a proper rest knowing that she is being well cared for.
Karen, Jessie’s mum, explained: “When we heard about EACH we were hesitant to be referred at first as we always thought of the charity as being focused on end of life care. We soon realised they also support lots of children with long-term illnesses too. When Jessie stays at Milton it’s for one or two nights at a time, often her Grandma will stay there with her so she sees a familiar face in the morning and evening. She absolutely loves it.
“Jessie requires 24 hour care, as her tube feeds need monitoring throughout the night. The short-break care gives us a break from the interrupted nights, meaning we can get a proper rest without worrying about Jessie as we know she’s in safe hands.”
Milton hospice has a variety of specialist play equipment designed for children and young people of all ages and can be adapted to suit the individual needs of each child. This includes the Omnivista which is Jessie’s favourite play activity when she’s at the hospice. The Omnivista projects a variety of bright playscapes onto the floor which are movement sensitive – allowing Jessie to interact with the images.
“Jessie loves “splatting” as she calls it, when she goes to the hospice – which is where she jumps on the fish that are projected on the floor. Every time we tell her she’s going to EACH she says she’s going to do some splatting! It’s a joy to watch her having fun when she’s there.
“Going to Milton allows children like Jessie to play with other children in a safe environment and gives parents a much needed breather from what are often complex care routines. The support we receive from them is just fantastic!”