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Seventeen-year-old Tiahn’s face lights up as she talks about the puppy she’ll soon be the proud owner of.

Becoming a puppy mum has given Tiahn something to look forward to while facing a challenging health journey living with a chronic health condition and spending extended time in hospital over the past 12 months.

Tiahn’s condition, gastroparesis, causes the muscles around the stomach to not work properly and food to stay in the stomach for longer than usual, meaning it doesn’t breakdown as quickly as it should. She was also diagnosed with Superior Mesenteric Artery Syndrome (SMAS), a rare condition involving compression of part of the small intestine between two arteries, which has since resolved.

Due to her condition, Tiahn is dependent on a feeding tube and total parenteral nutrition (TPN) to help meet her growth, nutrition, and hydration needs. Tiahn’s TPN currently runs over 18 hours each day, leaving her six hours each day to move about without being connected to her pump.

Last year, Tiahn underwent two major abdominal surgeries and spent 230 days at The Children’s Hospital at Westmead. Most of this time she spent on Wade Ward, while a speciality gastroenterology team ran extensive investigations to help manage her condition.

Throughout this challenging time, Tiahn stayed positive and made the most of the small moments. She dressed up as Eleven from Stranger Things for the hospital’s annual Party Day and always had a chat with those around her, whether it was the nurses or the cleaners on her ward. 

“The cleaners would chat with me when they had time and would always keep me company, and the Ward Clerk would walk with me from the school. The nurses on Wade Ward were truly the best part of my experience � they helped me advocate for myself when things weren’t easy, and they are some of the kindest people I have ever met,� Tiahn said.

A moment that stands out in Tiahn’s memory was when the Nurse Unit Manager of Wade Ward, Gabi arranged a surprise video message for her from the cast of her favourite musical, The Phantom of the Opera.

“It is one of my favourite memories and truly made my year. I received the message on the afternoon that I had gate leave to see the musical after being in hospital for five months, which made it extra special. Things like that show just how much a person cares for their line of work.â€� 

While it’s been a challenging journey for Tiahn and one that’s ongoing, with the support of a multidisciplinary care team and her family, she has been navigating her way through moving forward with a chronic medical condition.

Recently, Tiahn has become the first patient at CHW to be trained to administer her own TPN at home.

“Over six weeks while I was in hospital, the team taught me how to do my own TPN. This meant I was able to be discharged from hospital just before Christmas last year and got to spend it at home with my family. I also got to celebrate my 17^th birthday at home with friends in January which meant the world to me,â€� Tiahn said.

Claudia Borg, Intestinal Rehabilitation Clinical Nurse Consultant, said the ability to train patients and their families helps make sure they can have the best quality of life possible.

“Training eligible patients and their caregivers to provide their PN treatment at home enables them to be discharged after a lengthy hospital stay. This has a profound impact on quality of life for patients like Tiahn and their families,� Claudia said.

While Tiahn’s journey has been nothing short of challenging, her experiences have still inspired her to pursue a career in healthcare, encouraged by the care and expertise of all those who have supported her.

“I have always wanted to go into healthcare but now more than ever, I hope one day I can be as good as the nursing staff and doctors who have looked after me. I have had the best doctors of my life at CHW. They are incredibly kind and have brilliant minds. I have a great deal of respect for them�, Tiahn said.

Tiahn has a powerful message to share with other young people who might be going through a similar experience, faced with a chronic health condition(s) or health challenges, and to the wider community in how they approach those who may appear differently to the ‘everyday� person.

“To other young people going through a similar experience, advocate for yourself. You know your body better than anyone, and if something doesn’t feel right, trust your instincts. Keep looking for answers and people who will listen to and support you through your journey.

“To the community, if you see someone in public with a medical device or any problem, it’s okay to be curious, but don’t blatantly point and stare. I hope the wider community can become more educated about medical devices and the help they provide people like me."