Twelve-year-old Ariel is like most teens her age. She is quietly sassy, has a wicked sense of humour and loves spending time with her friends. All of this is possible thanks to parenteral nutrition, which helped save her life.
Born weighing 800 grams, Ariel made an early entry into the world at just 25 weeks gestation, while her parents were travelling overseas.
Ariel was admitted to an international Neonatal Intensive Care Unit (NICU) and was soon diagnosed with severe short gut syndrome.
The condition occurs when a significant portion of the small intestine is either removed or doesn’t function properly, affecting the body’s ability to absorb essential nutrients and fluids from food and water.
For Ariel, the diagnosis was not only the beginning of her five-month journey in NICU, but also the start of her journey with parenteral nutrition (PN).
Parenteral nutrition is a specialised and lifesaving treatment designed to provide vital nutrients and hydration intravenously into the bloodstream, allowing the nutrients to bypass the digestive tract and be delivered directly into the circulatory system.
From one month of age, PN has helped keep Ariel alive.
“You go into a little bit of survival mode as a parent, but we really didn’t know if she was going to make it because she was so tiny when she was born. I was just in shock for a little while,” Ariel’s mum, Miranda, said.
“We learned to live with the uncertainty and take each day as it came. It sounds cliché, but it really was just about putting one foot in front of the other and eventually the emergency calls in the middle of the night got fewer and further in between.”
At five months old, Ariel had reached a weight of two kilograms and was medically well enough to be transferred to Australia.
Back home, Ariel was admitted to Sydney Children’s Hospital, Randwick (SCH) where she remained for a further six months while she recovered. During this time, her parents underwent six weeks of training, learning how to administer PN at home.
“Part of the training is about practising something so much and doing something so well that you’re unconsciously competent if something goes wrong. It also involves practical tips like how to administer PN safely to a wriggly one-year-old who just wants to go and play,” Miranda said.
Thankfully, Ariel made it home in time for her first birthday – a feat made possible by the expertise of Ariel’s care team, her parents’ dedication to home PN training, and the capabilities afforded by the home PN service offered by SCH.
Home PN is often not just a treatment but a lifeline for children and young people like Ariel who depend on it to meet their essential nutrition and growth needs and is a vital way to empower families in the providing care so patients like Ariel can spend less time in hospital, and more time at home, where they belong.
“It’s amazing that we can do this at home, that she can get her nutrition and the way medical treatments and technology have improved so much. Even twelve years later, I’m still amazed that it exists, and we’re just so grateful,” Miranda said.
Administering home PN requires a high level of organisation and coordination for both the medical care teams and parents and carers.
“It’s not just doing the procedure, there are so many other things to organise. It’s the delivery of the parenteral nutrition, which requires cold chain integrity, staying on top of all the supplies and the highest hygiene standards – something we’ve been doing for over a decade now,” Miranda said.
With home PN now an integrated part of the family’s routine, Ariel has been able to become much more mobile. She attends school, has been on overseas holidays, road tripped around outback Australia and as Miranda says, can’t be stopped from living the good life.
“Home PN is just what we do, and we’ve become very good at planning. A couple of years ago, we went on a road trip around outback Australia. It meant making special stops at delivery points to pick up her PN supplies, storing the bags safely, and carefully planning a caravan which would have a constant power supply and high-quality hygiene, as well as packing spare batteries, and having a radio satellite phone in case of an emergency.”
Miranda says the organisation is well worth it to see her daughter living her best life possible, and the help of her care team means they always have support they need when they need it.
“The same team that were waiting for us at the hospital when we first arrived in Sydney with Ariel as a five-month-old baby are the team that care for us today. It’s really helped to know we always have our team around us to support and help us,” Miranda said.
“They always know what’s going on with her health and have supported us on all our adventures. It’s provided an extremely holistic approach to care and the team has been like a backbone to our family’s journey with PN.”
Home Parenteral Nutrition Awareness Week, 15 to 22 October 2023, brings focus to the remarkable young individuals and the dedicated families and healthcare professionals who tirelessly support them in receiving parenteral nutrition to meet their nutrition and growth needs from the comfort of home. This week, we are dedicated to raising awareness, offering support, and championing the cause of these extraordinary young lives who thrive with the help of parenteral nutrition.