Sligo mum pens children’s book about her daughter’s rare condition

Lilly-May White from Streamstown, Ballisodare was born with a rare birth defect called oesophageal atresia and tracheo-oesophageal fistula (TOF/OA).

Oesophageal atresia is a rare birth defect that affects a baby’s oesophagus (the tube through which food passes from the mouth to the stomach).

The upper part of the oesophagus doesn’t connect with the lower oesophagus and stomach. It usually ends in a pouch, which means food can’t reach the stomach.

It often happens along with another birth defect called a tracheo-oesophageal fistula, which is a connection between the lower part of the oesophagus and the windpipe (trachea).

Lilly-May was born in May 2021 at Sligo University Hospital and was rushed to Crumlin Children’s Hospital in Dublin where she had surgery to repair the defect. She has undergone five more procedures and now she is thriving.

Saoirse White, Lilly-May’s mother, a teacher in St Clare’s, Manorhamilton, said her daughter is an incredibly brave and resilient little lady and she has an inestimable zest for life.

“It was a tough start but she makes everyday worth any battle,” said Saoirse who wanted to create a children’s book to explain her daughter’s condition.

Lilly-May has what is known as a TOF Cough and it is quite a barky cough. Saoirse wanted Lilly-May to have her own story so that she could tell of her unique entry into the world and how much bravery she had to show. It is also a way for her to explain her cough or why she needs to be careful with food.

Saoirse hopes to sell the book internationally to teach other children about differences and also so that other TOFs can use it to tell their story.

Saoirse and her husband Barry along with Lilly May launched the book, ‘Tremendous, Outstanding, Fearless’ in St Honore Cafe in Sligo on Wednesday last on her second birthday.