“It helped the whole class understand before he even started”: How a book is helping children with tracheostomies feel included.
When three-year-old Isaac started nursery, his classmates already knew something important about him.
They knew about the small tube in his neck that helped him breathe. They knew not to touch or pull it. Most importantly, they knew Isaac could still play, learn, and be part of the class like everybody else.
That understanding came from a children’s book.
Isaac had a tracheostomy fitted when he was a baby after being born with complex airway problems, including paralysed vocal cords, upper and lower airway issues and a floppy airway. For his parents, learning to care for him was overwhelming at times.
“Until Isaac needed one, I thought tracheostomies were generally something older people had, not young children,” said his dad, Kyran Lowe.
“Since then, I’ve learned a lot myself from dealing with it every day for over two years.”
For families like Isaac’s, everyday life can involve constant planning, training, and explaining. Nurseries and schools need to understand how to care for a child with a tracheostomy safely, while other children are often naturally curious about the equipment.
“We have to train the staff looking after him and make sure they understand his needs and health and safety,” Kyran explained.
“For example, Isaac can’t play in sand or water without extra precautions, so there’s lots for nurseries to think about.”
Shortly after Isaac received his tracheostomy, his surgeon and specialist nurse at Queen’s Medical Centre gave the family a copy of The Abilities in Me – Tracheostomy - a brightly illustrated children’s book that follows the daily life of a young boy living with a tracheostomy.
For Isaac’s family, the impact was immediate.
“It’s a resource that’s carried him through to now,” Kyran said.
“We use it to explain things to other children in the family and nursery read it to the class.”
Ahead of Isaac joining nursery, staff shared the book with his classmates so they could better understand his tracheostomy before meeting him.
“The children were expecting Isaac because they’d already read the story,” said Kyran.
“They understood what his tracheostomy was and knew not to touch or pull it.
“It made the transition so much easier - not just for the children but for the nursery practitioners too. Isaac was included from day one.”
Now, thanks to a £300 grant from Nottingham Hospitals Charity, more families across Nottinghamshire will receive the same support.
The funding has enabled the Ear, Nose and Throat (ENT) and Paediatric Intensive Care Unit (PICU) teams at Queen’s Medical Centre to buy 50 copies of the book - enough to provide one to every child receiving a tracheostomy over the next five years.
The idea came from Miss Sheneen Meghji, Paediatric ENT surgeon at Nottingham University Hospitals NHS Trust, after she discovered the book during her first few weeks working at Queen’s Medical Centre. Previously, families had borrowed copies for a short period of time, but staff wanted children to be able to keep them permanently.
Specialist Paediatric ENT Nurse Liz Shipman had already been sharing the books with families caring for children with tracheostomies, recognising the difference they could make during an incredibly difficult time.
Sheneen said:
“Having a paediatric tracheostomy is a huge adjustment for children and families. There is so much learning and emotional processing involved, not just for parents but for siblings, grandparents, schools, and nurseries too.
“This book helps make conversations easier. It shows children that they can still be included, still play, and still be themselves.
“We wanted families to be able to keep the book rather than borrow it for a few weeks, so we’re incredibly grateful to Nottingham Hospitals Charity for making that possible.”
Each family will now receive their own copy from their surgeon or specialist nurse as part of the child’s tracheostomy education and support.
Around 10 to 12 paediatric tracheostomies are performed at QMC each year, meaning dozens of families will benefit from the charity-funded books in the years ahead.
For Kyran, the value of the book goes far beyond words on a page.
“It helped other children understand Isaac before they even met him,” he said.
“That made a huge difference.”
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