In the last decade, the number of children treated by the Inflammatory Bowel Disease (IBD) clinic at The Children’s Hospital at Westmead has tripled. Conditions like Crohn’s Disease and ulcerative colitis are chronic and can have serious impacts not just on children’s intestinal health, but also their growth, development, nutrition, mental health and their quality of life.  

Thanks to donors to Sydney Children’s Hospitals Foundation, the IBD clinic at The Children’s Hospital at Westmead has been able to expand its services to meet this demand and help more children with serious chronic gut conditions spend less time in hospital and more time enjoying their childhood.

One of the clinic’s patients is six-year-old Bec who was diagnosed with Crohn’s Disease at four. Bec loves soccer, football, gymnastics and playing with her dog, but two years ago, Bec’s mum Leanne noticed something was wrong with her usually lively and happy daughter. “She was extremely tired. She had a loss of appetite. She wasn't eating very well, and her food wasn't staying in. We noticed that she had an increase in bowel movements, and we just knew that something wasn't quite right.

After three months of tests and uncertainty, Bec was diagnosed with Crohn’s Disease and was referred to the IBD clinic at The Children’s Hospital at Westmead where her treatment journey began. For Leanne, the diagnosis came after months of concern about what was wrong with her daughter. “We were in one way relieved when we found out that she had a diagnosis, because it meant that we could move forward with her treatment and get her the care that she needed.” 

Bec began to be treated at the IBD clinic under the care of gastroenterologist, Dr Magoffin. Thanks to SCHF donor funding, the IBD clinic has become a wraparound service, offering far more than gastroenterological services alone. “Our IBD clinic at the Children's Hospital at Westmead aims to be a holistic, one-stop-shop clinic where our patients can see specialist clinicians, but also have access to the IBD nurse, dietitian and psychology just to provide well-rounded care for all their needs,” says Dr Magoffin.

Having such high-quality wraparound care has significantly improved Bec’s treatment journey. “We see our wonderful specialist who clearly explains Bec’s treatment and results, and we also see the dietician regularly. We have been introduced to the psychologist, but what we love most is the IBD nurses. They are like the glue that holds the whole team together. They come and visit Bec when we're in hospital. They're just a constant contact and the journey would be so much different without them here,” says Leanne.

Bec’s treatment journey has had its up and downs, with Bec spending time in hospital during 2024 after the previous medication which had kept her symptoms at bay stopped working for her. “It's a lot to take in when you're told it's just not working anymore. So, when the medication didn't work, additional tests were done. Bec had another colonoscopy to work out where the disease was. And it was decided that she needed to go on a new medication. And once Bec changed medication, she really improved.”

Bec is now an outpatient at the IBD clinic, coming in once every few weeks for an infusion of medication that is keeping her well, keeping her out of hospital and back at home with the things she enjoys. “When Bec was unwell, at one point, I was wheeling her around the hospital because just walking was quite exhausting. So, to see her back doing sports and back on the trampoline and running around is just so wonderful.”

There has been a huge increase in children like Bec who present at the IBD clinic with complex gut conditions. “We have close to 100 new patients a year through our service,” says Dr Magoffin, “and when I began practice here, it was less than 20, so it's been a remarkable rise, and an increased workload.”

While donors to Sydney Children’s Hospital Foundation have dramatically increased the scope and abilities of the IBD clinic to deliver a world-class service to these kids, the need for this care is ever growing.

“A child with IBD needs care all under one roof so that when there's an acute problem, they can contact someone to address any problems and keep them out of hospital. They need a team that talk, that work together to optimise medication to keep a child well. Philanthropy has recently provided an injection of funding which has provided a wider multidisciplinary team. And I've noticed with that support, the ability to care for my patients and provide the care they need has been greatly enhanced. It's been amazing to have that support.” 

For Bec and many children like her, managing IBD will be a lifelong journey, but Leanne is proud of the way that despite her young age, Bec takes her illness in her stride. “It surprises me how much she handles and how much she can cope with so well. At one stage I said to her, ‘it's okay not to be okay’. And she said, ‘Mum, it's okay, getting sick is part of life, and you know we can get through it’.”

This has taught me really what the priorities are in life. The importance of quality family time and just pausing. Life's very busy, and sometimes we just need to stop and enjoy the time with each other and to really focus on what's important.”

Kids like Bec with chronic, life-long gut conditions need high-quality, holistic care, and the need for the IBD clinic’s services is increasing every year. This Sydney Sick Kids Appeal, you can support the vital services of the IBD clinic, ensuring it can continue to provide the care that these kids need.