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Tracheostomy patients party like princesses and superheroes

Posted on Monday 19th November 2018
Children enjoying the annual tracheostomy party with a ball pit and entertainment

Evelina London staff and young patients enjoying the tracheostomy party, including Thomas King (top right)

Families enjoyed princess and superhero themed fun at Evelina London’s fourth annual tracheostomy party.

Evelina London’s ear, nose and throat (ENT) team hosted a very special party for 28 tracheostomy patients and their families.

The party gives families of children who are either living with or have previously had a tracheostomy a chance to meet and catch up with families with similar experiences.

A tracheostomy is a small plastic tube which is inserted into the windpipe to form an artificial airway for people with breathing difficulties.

Samantha Gainfort, ENT nurse specialist, is part of the team who have been organising the party since 2015. Samantha said: "I first came up with the idea of an annual celebration when a family I was caring for told me that their child had never been invited to a party. People can have preconceptions about children with a tracheostomy and are often scared of the unknown which means they might be nervous about inviting them to social events. I wanted to host a party so that all our patients would feel included.

"By hosting the event each year, families can enjoy all of the usual fun of a children’s party in a safe and supportive environment. We have all the activities you would expect at a children’s party, we even theme them each year. So far we’ve had a teddy bear’s picnic, Halloween party, cowboy hoedown and most recently a princesses and superheroes theme. It means that the children can have a fun experience at the hospital and associate us with fun, especially when they see us dressed up. I organise the parties with Suk-Ying Man and Victoria Jennings, from the ENT nurse specialist team. We also have the help of our play specialist, Shirin Vohra, and speech and language therapist, Louise Edwards.

"It’s also an important opportunity for families to meet each other and share experiences. We’ve seen different families supporting one another and strike up lasting friendships over the years and they’re families that may not ordinarily meet. It’s wonderful to have some of the same families attend year after year."

Thomas King has been cared for at Evelina London Children’s Hospital for most of his young life. After being born with a heart defect, he will need a series of three complex heart operations, the first took place shortly after birth and the last is expected to take place around the age of three. He also relies on a tracheostomy to help him to breathe.

Thomas’ parents, Emma Page and Ryan King, from Dover in Kent, brought Thomas, who is almost two, and his younger brother, Henry, to the party.

Thomas’ dad, Ryan, said: "It was the first time that Thomas realised that he wasn’t the only child to have a tracheostomy. For us, that meant a lot, because in ‘normal’ situations he realises that he is different to other children. He often looks at his best friend back home and realises he doesn’t have one. Seeing children at the party with a tracheostomy just like him, he was able to engage with them and I think it helped him to understand his own tracheostomy. Nobody at the party stopped and stared at him, which in home life we get quite a bit."

Children and their families enjoyed live entertainment, a disco, face painting, caricature badge making, arts and craft activities and were even given a party bag to take home.

Special thanks to Dancing Cubs soft play, face painter Carole Sloan and DNA children’s entertainment for their time, and to Guy’s and St Thomas’ Charity and Rays of Sunshine for funding the event.

Guy’s and St Thomas’ Charity raises money for big things and small touches that make our life-saving care even better and help our patients and their families feel really looked after. For more information about fundraising for Evelina London visit www.supportevelina.org.uk.

©  Guy's and St Thomas' NHS Foundation Trust.
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