Belinda Caldwell (with daughter Lucinda, centre of photo) welcomes funding for the RCH Eating Disorders Program. Photo courtesy of the Age.

Young people with eating disorders such as anorexia nervosa have every chance of reaching a cure thanks to proven, intensive treatment, according to staff at The Royal Children’s Hospital (RCH).

This week, the State Government announced $3 million additional funding for the RCH Eating Disorders Program – a commitment welcomed by RCH staff and families.

Director of the RCH Centre for Adolescent Health, Professor Susan Sawyer, says the funding is a coup for Victorians, with adolescent services often overlooked in funding decisions despite the high prevalence of eating disorders in this age group.

“I’ve been working with young people with eating disorders for the past 17 years. Given the benefits of investing in curative treatments for anorexia nervosa in adolescence, we’re absolutely delighted with these new funds,” Professor Sawyer said.

The Victorian Government has allocated the funding over three years to enable the RCH to increase the award-winning intensive support it provides young people with eating disorders and their families.

“Four years ago, funding from the Baker Foundation meant that the RCH Eating Disorder Program was able to implement world’s best practice for eating disorders, known as family based treatment (FBT) or the Maudsley treatment. Since then, we have seen a dramatic improvement in our clinical results,” Professor Sawyer said.

The revolutionary treatment is guided by a team of adolescent and mental health clinicians whose focus is empowering parents to form a key part of the healing process. Parents are actively engaged in their child’s refeeding at home by supervising every meal, even if this takes hours of support and encouragement.

Professor Sawyer says FBT has contributed to a 75 per cent drop in readmission rates at the RCH, with 97 per cent of those who complete the program recovering fully and many teenagers weight restored within six months.

“Previously, treatment failure was the norm. After many years of unsuccessful treatment, we commonly had to ‘graduate’ our older adolescents to adult services as they failed to recover. The introduction of FBT means that we now aim for cure in adolescence,” she said.

Seventeen-year-old Lucinda Caldwell has been undergoing FBT for anorexia nervosa with the RCH Eating Disorder Program for 13 months. Her mother Belinda Caldwell was thrilled to hear of the government’s funding allocation and says it provides hope to other families who were not able to access the program.

“We feel blessed for having the journey we’ve had with our daughter’s eating disorder thanks to The Royal Children’s Hospital program. The approach has made it far simpler for us by diagnosing Lucinda early, offering a clear treatment pathway and taking so much of the stress away from us as a family,” Mrs Caldwell said.

“Lucinda is not out of the woods yet, but she’s medically stable and hasn’t been readmitted since she commenced the program in April last year. Every day we thank our lucky stars,” she said.

Professor Sawyer says despite the success of the RCH Eating Disorders Program, which won a Victorian Public Healthcare Award in 2011, there remain families who find the journey more difficult than others.

“These new funds will enable us to provide more intensive support for those young people who continue to struggle with anorexia nervosa despite FBT. For families struggling with a child with this disorder, these funds will be a lifeline,” she said.

Read more: Empowering families to tackle anorexia together

Mohamed recovering after transplant surgery. View full gallery below.

A 13-year-old boy has made Australian history by becoming the country’s first paediatric intestinal transplant recipient, in surgery performed at The Royal Children’s Hospital (RCH).

The complex, multi-organ operation – a collaboration between the RCH and Austin Hospital – was led by Austin Hospital surgeon Professor Bob Jones last week.

Mohamed El Shazly had intestinal failure due to gastroenterological condition ‘Hirschsprung’s disease’. Since infancy his condition has worsened and he’s spent much of his life as an inpatient at the RCH.

The ten-and-a-half hour surgery gave Mohamed a new liver, small bowel, pancreas and duodenum – and a second chance at life.

Professor Jones said the operation went smoothly.

“Pleasingly, the surgery went very much to plan. We removed Mohamed’s original liver and small bowel, but retained his original pancreas and duodenum. We then transplanted the four donor organs (liver, small bowel, pancreas and duodenum) as one package,” Professor Jones said.

“While Mohamed now has two pancreases and two duodenums, only the new organs will function,” he said.

The team then performed a second procedure days later to completely close the abdominal cavity once swelling had reduced.

For most of his life, Mohamed has been fed via a tube in his veins. Also known as parenteral nutrition, this method of feeding provides essential nutrients and fluid to sustain life and enable growth and development in patients who are unable to eat.

RCH Head of Clinical Nutrition, Professor Julie Bines, says intestinal transplantation offers Mohamed the possibility of achieving nutritional dependence.

“Whilst parenteral nutrition has been keeping Mohamed alive as he waited for a transplant, it is associated with potential life-threatening complications such as sepsis, loss of venous access, metabolic complications and liver disease.

“Not only does intestinal transplantation reduce these risks for Mohamed, we hope he will soon have the ability to satisfy his desire for food and eat just as an average boy does,” Professor Bines said.

RCH Head of Liver and Intestinal Transplantation, Associate Professor Winita Hardikar, says Mohamed is recovering steadily after last week’s operation.

“Mohamed is a courageous, resilient boy. He endured the operation well and is recovering as we’d hoped, but he does have a challenging journey ahead,” A/Professor Hardikar said.

“There is still a high risk the body will reject the new organs and infection is also possible. We need to monitor his progress closely and provide months of high level care before we can declare the surgery a success,” she said.

The RCH has been working in collaboration for some time with Austin Hospital on the development of an intestinal transplantation program.

A/Professor Hardikar said the development of intestinal transplantation at the RCH was a logical progression in meeting the clinical needs and expectations of patients with irreversible intestinal failure and their families.

“The Royal Children’s Hospital has spent the last 17 years building up our expertise in liver transplantation. We have well-trained medical and surgical staff and the ability to deal with complex illnesses. We also had the benefit of learning from the first adult intestinal transplant performed at the Austin Hospital in 2010,” A/Professor Hardikar said.

It was announced soon after the first adult transplant that the next intestinal transplant in Australia would be a paediatric one; however, the RCH waited nearly two years for organs from an appropriate donor to become available.

“Unlike other organ transplants, an intestinal transplant requires organs of equivalent or smaller size than the recipient. That’s in addition to the usual considerations, such as blood type,” A/Professor Hardikar said.

She said Mohamed’s journey has been the culmination of years of hard work from many departments across both the RCH and Austin Hospital.

“The teamwork required to keep Mohamed alive has been phenomenal. The medical, surgical, nursing and allied health support has included gastroenterology, clinical nutrition, intensive care, infectious diseases, interventional radiology and anaesthesia, just to name a few,” she said.

RCH Chief Executive Officer Professor Christine Kilpatrick says the surgery and ongoing complex care of patients with intestinal failure complements the national leadership position of the RCH.

“The Royal Children’s Hospital is already a nationally funded centre for paediatric heart, lung and liver transplantation. We hope to develop an intestinal transplantation program, in collaboration with Austin Hospital, which will have a significant impact on the futures of children with intestinal failure,” Professor Kilpatrick said.

“Importantly, we mustn’t forget that Mohamed has been granted a second chance at life thanks to the generosity of a grieving family. We wish to thank them sincerely, as we do all organ donors, for their selflessness during the most emotional of circumstances,” she said.

Mohamed was one of a number of patients in Australia in desperate need of an intestinal transplant. To register to become an organ donor, visit www.donatelife.gov.au.

RCH heart patient Coco. Photo courtesy of the Herald Sun.

Cute Coco du Chateau has had a remarkable start to life.  At just eight months of age, she’s already endured three open heart surgeries for congenital heart condition, pulmonary atresia.

Coco has spent much of her young life at The Royal Children’s Hospital, and in fact moved from the old hospital to the new RCH on 30 November 2011.

Over that time RCH cardiologists and cardiac surgeons have worked hard to correct Coco’s heart defect and manage her condition.

Click here to read Coco’s full story on the Herald Sun website.

A new form of treatment for adolescents with anorexia is making the prospect of ‘cure’ a reality.

The Royal Children’s Hospital’s (RCH) Centre for Adolescent Health commenced ‘family-based treatment’ for anorexia in 2008 and already admission rates have dropped by 56 per cent.

“Before, we were not really focused on cure because we saw that so infrequently for those who were very unwell.  Cure is now completely expected,” says Professor Susan Sawyer, Director of the RCH Centre for Adolescent Health.

The revolutionary treatment involves empowering parents to form a key part of the healing process.  Parents are encouraged to actively engage in their child’s refeeding at home by supervising every meal, even if this takes hours of support and encouragement.

The idea is to create an understanding and dialogue within the family unit that externalises the disease – families affirm that it is “the anorexia” that is preventing the teenager from eating or compelling them to exercise or purge; the teenager themself is not to blame.

Whilst the program is intensive, it is achieving remarkable results.  Many teenagers are weight restored within six months.

RCH clinical nurse consultant Stephanie Campbell says it is important to deal with the weight first, as this will improve a patient’s mental health.

“It’s all about weight restoration.  It’s getting the parents on board and empowering them to refeed,” Ms Campbell said.

“At the beginning patients will say that 80 to 90 per cent of my thoughts are about eating or food, it’s all consuming.  And at the end of the six months, they’ll say maybe 10 per cent,” she said.

Traditional treatment of anorexia was a revolving door of patients being admitted to hospital, fed with supervision from a clinician or through a nasal gastric tube, then sent home for outpatient psychological treatment.  The patient would invariably be readmitted to hospital numerous times a year with recovery taking an average of seven years.

Family-based treatment has seen readmission rates at the RCH drop 75 per cent with 97 per cent of those who complete the program recovering fully.

The program is supported by a grant from the Baker Foundation, with $3 million in recurrent funding promised by the state government in the 2010 election.

Click here to read the Sunday Age story.