Complex congenital colorectal conditions: Understanding the long-term psychological impact upon patients and their families


Many children each year are born with complex congenital colorectal conditions. The most common of these are anorectal malformations (ARM) and Hirschsprung disease (HD), which each affect 1 in 5000 children. These children require multiple operations, and there is increasing recognition that they may require life-long care.

Whilst there have been great advances in the last three decades in the surgical management of ARM and HD, the psychological impact remains significant. With increased awareness of the need for psychological support, it is hoped that more patients and their families will thrive, rather than just survive.


Dr Sebastian King is a paediatric surgeon with a subspecialty interest in colorectal conditions affecting neonates and children. He completed his PhD in 2008 with The University of Melbourne at The Royal Children’s Hospital. His research focused upon the motility patterns of children affected by slow transit constipation. His PhD was supported by scholarships from the Royal Australasian College of Surgeons and the NHMRC. Following completion of his paediatric surgical training at The Royal Children’s Hospital, he underwent further colorectal and neonatal surgical training at Cincinnati Children’s Hospital, USA and The Hospital for Sick Children, Toronto, Canada.

Greg Ryan is a former RCH patient – now Consumer Representative on the RCH Family Advisory Council. Greg was born in 1964 with an anorectal malformation (ARM). He had his first surgery at RCH within 18 hours of life, under the care of the world-renowned Mr Douglas Stephens. He was subsequently cared for by Mr Nate Myers and Mr Justin Kelly. After 20 years of admissions, surgeries, emergency department visits and outpatient appointments, he was told he was now too old for RCH. Unfortunately, living with a chronic congenital colorectal condition was extremely difficult. This took a massive toll on Greg as a child and adult, both physically and emotionally. He kept his “secret” hidden from the world, until very recently. In 2014 Greg discovered that he wasn’t alone with ARM, and has now dedicated himself to becoming an online advocate within the ARM community. This led to the international release of his book “A Secret Life” in 2017. Greg has spoken nationally about his life with ARM, as well as in the USA and Europe. Founder of the ONE in 5000 Foundation.

Bridgette Liedtke is the mother of a 12 year old boy with an anorectal malformation. Psychiatric nurse of 24 years’ experience. Administrator of a number of online support groups for patients with anorectal malformations and their families. Her son has had multiple admissions to RCH over the last 12 years, allowing her great insights into the complexities of healthcare for chronic conditions. She has been a vocal advocate for her son, and for many other patients. Bridgette works tirelessly for the anorectal malformation community. She is the administrative officer for the Victorian Anorectal Malformation Support Group, as well as being actively involved in the VACTERL Association (both in Victoria and nationally). She is committed to improving the psychological outcomes for patients with anorectal malformations, and their families.




Comments are closed.

Previous post Next post