Mohamed shares his incredible RCH journey
August 23 2017, 4:57 pm

Recipient of Australia’s first paediatric intestinal transplant, RCH patient Mohamed El Shazly has had an incredible journey. Here he shares that journey in his own words.

This is a story about my wonderful journey at The Royal Children’s Hospital (RCH). It all started when I was one day old in my home country of North Sudan in Africa and was diagnosed with Hirschsprungs Disease, which means that part of my colon was missing the nerves needed to work properly.

When I was three years old I went to Egypt for better care. There they removed some of my large and small intestines and I was able to live well for a couple of months. However, things quickly turned for the worst when I turned four. For a while my mum traveled with me back and forth to Egypt before I was able to come to Australia.

After getting off the plane, I came to the RCH where I had surgery to remove just about all of my intestines. I then stayed in hospital for nine months straight.

When I was seven years old and in the best condition possible, I was able to start school, which made me the oldest kid ever in every year level! It was not easy, as I had a nasogastric tube which fed me for nine months and had Total Parenteral Nutrition (TPN) for 10 years straight. I had to return to the hospital nightly to have it and could only go on day leave until my parents were trained to connect me to my feeds and TPN so I could stay at home. I also struggled with infections and was frequently in and out of hospital.

In 2007, my liver became so irreversibly damaged that my eyes and body went yellow, and it was clear I would need a liver transplant. While I was waiting for the transplant I lived my life the best that I could, making friends and unforgettable memories with nurses, doctors and all at  the RCH, which makes them very much family.

In 2012, I had a life changing liver and intestinal transplant surgery, which gave me and all like me hope for a second chance at life. Now I live TPN and liver problem free, being able to cause mischief and eat whatever I like. And it’s all thanks to the RCH.

 

Getting Mohamed Well

The Director of RCH Gastroenterology, Professor Winita Hardikar has been Mohamed’s specialist throughout his journey.

“When I first met Mohamed 10 years ago, his liver was so damaged and his gut wasn’t working, so it was clear a transplant was needed.”

At the time, only one intestinal transplant had been completed in Australia for an adult patient. Intestinal transplants are incredibly 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.

This meant that Mohamed needed a high level of care to ensure a new liver, small intestine, duodenum and pancreas could be transplanted successfully.

“We learned a huge amount from this first transplant, which has helped us provide exceptional care for the patients that have come after Mohamed,” said Winita. “Mohamed has really become a mentor for these children and young people, someone they can look up to.”

Applying to become Australia’s Nationally Funded Centre for intestinal transplantation, the RCH has worked with Austin Health to develop the Australian Intestinal Transplant Service (AITS), which will provide life-saving care to some of our sickest children.