“Incontinence is associated with older people; however, it affects so many children. It is important to talk about it and remove the stigma. Let’s learn to talk about incontinence like we now do periods.”

This is the message from a mother. Her bubbly, strong, singing, dancing five-year-old daughter Lily* was born with the congenital condition Imperforate Anus/Anorectal Malformation (IA/ARM), leaving her without an anal opening or any sphincter muscles or nerve control in her rectum/anal area. As a result, Lily has continence issues and will need to manage this long term. Her continence is managed using continence aids, diet, staying healthy and carefully scheduling her life around her toileting needs.

Hailing from regional NSW, the family travelled to the Royal Children’s Hospital in Melbourne where Lily has undergone extensive surgeries to help her be more socially continent. She will require further surgeries in the future. IA/ARM takes a lot of time to manage and Lily’s * mother advises finding community and support as soon as possible is critical to your child’s wellbeing as well as your own.

Searching Google can sometimes cause information overload along with stress and anxiety. There is immense power in social media and Facebook groups where you can connect with others who are on the same path as you and your child. The hospital may also be able to put you in touch with families in the same situation or let you know of organisations such as the One in 5000 Foundation who provide support and host conferences for communities like the IA/ARM community.

The family are advocates who foster their daughter’s independence, privacy, and discreetness. They share her story only if it will help her, for example with teachers, physiotherapists and occupational therapists, and refrain from victim or burden language. When speaking of her condition, the family speak of her having her challenges.

The most significant advice they have for others from their journey thus far is:

“If something doesn’t feel right don’t be afraid to ask questions, no-one knows your child better than you.”