Community counts: the Paediatric Intestinal Transplant Program

It was only five years ago that the RCH conducted Australia’s first paediatric intestinal transplant.

It’s surprising to think it happened so recently until you understand how difficult an intestinal transplant is.

“Intestinal transplantation is challenging because the gut is a highly complex organ that plays an important role in the body’s immune response. Therefore, the risk of rejection after transplantation remains high despite advances in immunosuppression therapy,” says Kathe Holmes, Clinical Nurse Consultant for the RCH Intestinal Transplant Program. “Also, intestinal transplantation can range from an isolated intestinal graft to replacement of the entire abdominal cavity including stomach, pancreas, liver and kidney.”

Thanks to community generosity, the RCH is developing an Intestinal Transplant Program and working to become Australia’s Nationally Funded Centre for paediatric intestinal transplantation.

Kathe’s role is entirely funded by philanthropy and plays an important part in developing this program, as she works to establish processes and protocols for each step of every intestinal transplant patients’ journey.

Kathe is also helping to develop and deliver a national network of training, liaising with multi-disciplinary teams within local and interstate transplant units. Her work also includes building the capacity of interstate units to provide optimal post-transplant care for patients.

“Patients referred to our program undergo an initial assessment in which we review them thoroughly to determine the individual risks and benefits of offering intestinal transplantation. Patients accepted for transplant receive a unique plan of care based on their individual case and the organs that need to be transplanted. Patients are then placed onto a national waiting list and, if possible, are supported to live at home during this period. Waiting times are extremely variable, as suitable donor organs can be quite rare.”

If a patient is fortunate enough to receive a donor organ, families must bring their child to the RCH for the transplantation procedure. Post-transplant, the child has many months of serious recovery and are closely monitored by experienced RCH clinical staff for complications like organ rejection. Patients not from Melbourne must stay in the city for one year post-transplant to be close to the RCH for regular and meticulous monitoring.

If able, families are supported in moving back to their home state after this critical year is complete. However, they must live close to their local transplantation centre, which can oversee the majority of their follow-up care, apart from ongoing follow-ups with the RCH Intestinal Transplant team.

So far, the team have successfully performed intestinal transplantation for two patients and have a third child on the list. It’s thanks to community support that these children will get the life-saving care they need.

“Imagine never being able to eat a meal with your family, or as a child, sleep over at a friend’s house or go on school camp. These children’s lives are so limited. By giving them a transplant, we’re giving them back a chance to experience these normal things. We’re offering them a future that they never thought possible.”

Support the RCH intestinal transplant program