Raven’s Story

Raven had two surgeries within the first seven months of life after being born with anorectal malformation (ARM). Her level of continence will not be known until it is time for toilet training.

The hospital experience was quite traumatising for the first-time parents because the condition was initially missed by professionals. It was only when bathing Raven for the first time that her father realised she had no anus. The midwife was called, and Raven’s emergency colostomy was scheduled for the next day. In a sense, it was fortunate that Raven was born with female anatomy which meant she was able to poo normally through a fistula. However, the fistula was dangerously close to her vaginal canal.

In Raven’s case, while the nurses in the NICU were incredibly supportive with stoma care during their week-long hospital stay, their knowledge about home care and ongoing stoma care was lacking. The only stoma therapist happened to be on leave at the time. Not yet aware of Dr Sebastian King, Greg Ryan or the stoma team in Cairns, Raven’s mother felt like she had been left to her own devices and for the next two weeks rang around looking for stoma care supplies.

At seven months old, Raven had a stoma reversal, so her mother began Googling how to dispose of the bags that were no longer needed. She soon connected with Greg Ryan who featured Raven’s story in his book. The lack of support for Raven’s family ignited in them a drive to fundraise for others with this condition and the 1 in 5000 Foundation. ‘Run for Raven’ involved the family running 5000 minutes in a month (1.5 hours every day) and raising $13,000 for the Foundation. Greg Ryan flew up to Townsville to support Raven’s family by organising a telehealth appointment with Dr King.

According to Dr King, Raven’s condition is more likely to cause constipation rather than incontinence and it is best to wait until three years old to start toilet training so that Raven does not form negative associations with the toilet. The conversation with Dr King helped to answer a lot of questions and therefore alleviated her parent’s anxiety. Now nearly two years old, Raven is thriving, and no further surgeries are required at the moment. The only noticeable difference is the increased need to open her bowels. Although hospitals are there to provide support, the general advice is to trust your parental instinct and pursue answers as much as possible. Giving back to the community, Raven’s mother has recently put brochures for the 1 in 5000 Foundation in the NICU to help any parents who are experiencing the same situation.

Raven’s family were warned she may reach milestones later due to her time spent in hospital. Although she is socially shy, she is very talkative among her family, very resilient and very astute. Having been through a rough patch with her birth, Raven’s mother is now dedicated to raising awareness of the condition and the 1 in 5000 Foundation.