For seven-year-old Dom, splashing around in the water at the beach near his north coast home is an everyday miracle. It’s something his mum, Lauren, says wouldn’t be possible if it wasn’t for parenteral nutrition.
When Dom was born, early signs showed something was not quite right. He was experiencing bilious vomiting and was unable to feed properly, prompting further investigation.
Testing revealed Dom was born with Hirschsprung’s Disease, a rare but serious congenital condition of the intestine. Dom required major surgery to optimise his bowel function. He had a major resection of his small intestine, also leaving him with a condition called short bowel syndrome.
Hirschsprung’s Disease is caused by nerve cells in the intestine not forming properly during development in utero, leading to an absence of nerves in parts of the intestine at birth. This causes blockage and prevents the intestine from functioning properly.
For Dom, his condition affects his ability to absorb fluids and nutrition through his small and large intestines and means he has relied on parenteral nutrition (PN) for almost his entire life.
Parenteral nutrition is a specialised and lifesaving treatment designed to provide vital nutrients and hydration intravenously into the bloodstream of those, like Dom, who are unable to absorb essential nutrients through their digestive systems. For children requiring this treatment long-term, parents and carers are able to be trained to provide PN in the home environment. It requires extensive medical training and a high level of coordination and organisation.
Claudia Borg is a Clinical Nurse Consultant in Intestinal Rehabilitation at The Children’s Hospital at Westmead (CHW) and is part of the intestinal rehabilitation/ parenteral nutrition (PN) service team. This team plays an integral role in supporting children undergoing intestinal rehabilitation and training families to administer PN at home.
“Enabling patients to receive this lifesaving treatment from the comfort of home when they are well enough has a huge impact on the quality of life for these children, who would often otherwise be unable to be discharged from hospital,” Claudia said.
“Home PN training ensures patients like Dom are receiving the nutrition and hydration they need to support their growth and development while continuing to live their lives alongside their peers”.
Dom’s parents have been administering PN at home since he was first discharged from hospital at four months of age, and with their son now seven years old, Lauren says it’s become second nature for their family.
“It’s become part of our nightly routine, and my husband Michael and I have always been a great team in supporting each other with Dom’s PN. Dom even helps turning his pump on and off and helps set up the supplies,” Lauren said.
As well as relying on PN, Dom has also undergone several surgeries to help his bowel and small intestine function as well as possible.
In 2018, Dom underwent a double barrel enteroplasty under the care of paediatric transplant surgeon, Associate Professor Gordon Thomas. This complex surgical procedure pioneered by Dr Albert Shun and Dr Gordon Thomas, is a bowel lengthening procedure that enables the remaining bowel to become more efficient in absorbing essential nutrients.
Lauren says the surgery was transformational for Dom. After the initial surgery, Dom’s gastroenterologists Dr Shoma Dutt and Dr Juliana Puppi worked closely with Dr Thomas and Dom’s parents to have him back at home with his family.
“Dr Thomas has been the miracle Dom needed and we will forever be grateful for his skill, empathy and how important he is to Dom and to our family,” Lauren said.
“Dom hasn’t required any serious hospital admissions since undergoing the surgery, enabling him to live his best life possible – attending school alongside his peers, and going to birthday parties and other events.”
“This has been particularly impactful as home for us is over five hours from Sydney, so it has significantly reduced the time we’ve needed to spend travelling to and staying in hospital for Dom.”
Dom has now gone from relying on PN 24/7 to only requiring it three to four nights per week. This has meant a greater sense of freedom for Dom, while for his parents, it has meant greater comfort in knowing their little boy is growing up to live his healthiest life possible alongside his peers.
“We recently purchased our first home on the Coffs Coast and Dom loves having a splash in the beach when the weather is warm,” Lauren said.
“While Dom absolutely loves hospital and being on the Clancy Ward is his home away from home, it is incredible to be able to provide Dom with the support he needs from the comfort of our own home.”
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.