Associate Professor Sebastian King is a paediatric surgeon whose specialty interest is children born with congenital bowel conditions such as anorectal malformation (ARM), and Hirschsprung’s disease. A/Prof King completed his PhD in slow transit constipation at the Royal Children’s Hospital, in Melbourne.

While completing his PhD, A/Prof King witnessed children receiving inadequate treatment for congenital bowel conditions, who were shamed and teased at school, and parents receiving inadequate support. When compared to children with heart conditions, diabetes, epilepsy, cancers, or cystic fibrosis, children with colorectal conditions received noticeably less support. In addition, when children with colorectal conditions have comorbid conditions such as heart anomalies or kidney problems, he found they received better quality follow-up. A/Prof King wanted to increase support for families and children with colorectal conditions.

After his fellowship training, A/Prof King spent time in the United States and Canada, where care of children with colorectal conditions was enhanced by a multidisciplinary team. While the Royal Children’s Hospital has a long and proud history of treating children with colorectal conditions, A/Prof King found it to be very surgeon focused.  He believed children could also benefit from excellent nursing and stomal therapy support, as well as psychology, social work, and better care coordination.

In 2016, he began thinking about establishing a centre and secured funding in 2019 from both the Royal Children’s Hospital Foundation and the Federal Government. These funds are used to support specialised nurses, allied health professionals and care coordinators to care for the children and families affected by complex colorectal and pelvic conditions. The Colorectal and Pelvic Reconstruction Service (CPRS) is now the national reference centre leading the way in complex colorectal and pelvic care in Australia. It also supports other colorectal and pelvic care clinics interstate and overseas.

As these colorectal conditions are often not diagnosed until the child is born, everything can feel like it is moving very quickly, and be overwhelming for parents. Indeed, often the first time A/Prof King will meet parents is after he has performed emergency surgery on their child after a hospital transfer. He is constantly in awe of the patient families’ resilience and wants to spread the message ‘You are not alone’. More than fifty families come through the CPRS each year.

The centre now employs two paediatric/colorectal surgeons, three paediatric urologists, a paediatric gynaecologist, a paediatric gastroenterologist, a general paediatrician, two clinical nurse consultants, two stomal therapists, a psychologist, a social worker, a child life therapist, a care coordinator and two research officers. Families now feel supported by a whole multidisciplinary team.

The aim is that by the time the patient is one year old, the patient’s stoma will be closed, and their bottom will be reconstructed. A/Prof King is incredibly proud that most of the children who have an appendicostomy because of chronic constipation will have it removed because their bowel recovers and adjusts. This means the CPRS has helped a child who was previously incontinent feel confident going to camps and sleepovers. The vision for the future is to bring in a physiotherapist, dietitian, and someone to help with the NDIS aspect.

The centre has free resources available, which aim to discourage scared parents from disappearing down the Google rabbit hole. The goal of the centre is to deliver the highest quality clinical care to children and families with complex colorectal and pelvic conditions and to increase awareness, understanding and knowledge of these conditions in the community, working collaboratively to educate health care professionals.

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