A phizz-whizzing Roald Dahl-themed party for children with tracheostomies

Evelina London’s ear, nose and throat (ENT) nurse specialist team hosted an amazing party for tracheostomy patients past and present. With lots of scrumdiddlyumptious snacks, an entertainer, face painting and a huge pink bouncy castle, the party gave families of children who are either living with or have previously had a tracheostomy a chance to spend time together in a fun, safe environment.

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

Claire Cornwell, one of the ENT nurse specialists who organised the party, said: “One of the most rewarding parts of my job is to see the happiness in the children’s faces at our annual tracheostomy party. To date, we have hosted 6 parties, all of which have had varying themes. This year, our team was inspired by Charlie and the Chocolate Factory, so my colleagues and I dressed up as Willy Wonka and Oompa Loompas!

“These super parties are an opportunity to allow the children and the families we care for to share their experiences and socialise together away from the clinical setting. This is important because these families are sometimes not invited to other parties due to having additional needs.”

“For families that are still staying in our Evelina London Children’s Hospital, it is a great opportunity to leave the ward and have an enjoyable and safe experience during a very stressful time. It also helps to show them that children with tracheostomies and home ventilators can lead a normal life with the correct training and support from the hospital. It was a privilege to see the children so carefree and enjoying themselves as children should.”

Ollie, who is 9 years old, attended the party with his mum and his sister. He now lives without a tracheostomy, but needed one for 5 years.

Ollie’s mother, Claire, explains: “The trache parties are fantastic, and it is so good to be able to see the nurses and other families. Having a child with a tracheostomy can be a lonely place but being able to get together and share our experiences with each other is great. The parties also offer the opportunity to support each other as all our children are at different stages in their journey. Some children have been decannulated which means they are able to reassure other parents who are about to go through it what happens.”

Ollie, enjoyed all aspects of the party, including the disco area, where he danced with one of his best friends, Izzy. His mum, Claire, explains: “When Ollie was fitted with a tracheostomy, we made friends with another family whose daughter (Izzy) was also having some breathing problems. Izzy ended up having her trache fitted 3 weeks after Ollie. We were put together on the ward and we all became great friends.”

Like their children, Claire and Michelle (Izzy’s mum), are close: “We did our trache training together and had our first walk off the ward with the children together. It was lovely and very helpful to have someone to go through the journey with. We regularly meet up with each other and are always at the end of the phone for each other.”

Ollie first experienced breathing problems when he was just 8 days old and has had many operations and procedures at Evelina London. Like many of the families attending the party, his mum is incredibly grateful for the care they have received from our ENT nurses. Claire says: “The ear, nose and throat nurses have always been a massive support to us. They always come and check in on us if they see we are at the hospital. We also have a number to call (or message) if we have any little worries or questions. They always reply and always get us the help we need.

“If I had to offer advice to another parent in a similar position to me, it would be you are not alone even though it feels like it. Talk to others and ask for help. The ear, nose and throat nurses are always there no matter what, even if you just need to talk to someone about the situation. I would also recommend going to the parties as it’s great to see other families and children who are going through the same journey as yourselves. It's also nice to let the children have fun knowing they are safe and lots of people who are trained to help look after them.”

Cleo, who is 4 years old, attended the party with her parents and her 1 year old sister, Bella. Cleo began her care at Evelina London in March 2021 when she was 10 weeks old, weighing just 4lbs and with difficulty feeding and breathing.

Her mum, Jess, explains: “We thought we would be in for 2 nights following a procedure to investigate her airway. 5 months later, Cleo was discharged with a tracheostomy, a gastrostomy and a continuing care plan at home.”

For Cleo, the party is very important. Her mum, Jess, says: “Cleo doesn't often see children with the same needs as her, especially where we live, so for her to have an opportunity to spend time with fellow tracheostomy kids, reminding her that she isn't alone, it is the best thing we could wish for.

“The kindness, support, honesty and care we received from the team (especially our consultant ENT surgeon, Ian, and our nurses, Emily, Felix and Su) made our difficult time at Evelina London so much more manageable. Emily liaised between all the teams involved in Cleo’s care. They helped us understand what was happening and made it their mission to get Cleo home again as soon as humanly possible. We were trained on how to care for Cleo with world class experts.”

Thank you to our staff and volunteers who made this party possible. We were pleased to have 2 guests from Roald Dahl’s Marvellous Children’s Charity join us (pictured). The charity fundraises to establish children’s Roald Dahl Nurse Specialists in hospitals like ours and supported the event. Thank you also to Atos for their support.

Learn more about our ear, nose and throat service.