Talon McRae was born prematurely at 34 weeks and was missing most of his intestines due to a birth defect called gastroschisis, leaving him with a condition known as intestinal failure (IF).
His mother, Kelly McRae, says Talon cannot absorb enough nutrients from normal food to grow and function like a normal healthy child. “He gets all his proteins, glucose, lipids and vitamins in a ‘drip feed’ called Parenteral Nutrition delivered via a tube directly into his bloodstream overnight at home.”
This is called Home Parenteral Nutrition, or HPN, and is a field Professor of Clinical Nutrition Gil Hardy has been actively researching for more than 30 years.
Talon’s HPN is made in a pharmacy under strict sterile conditions, and placed in plastic bags for shipment to the family home each week.
The stability and compatibility of these complex nutritional mixtures has been the focus of Professor Hardy’s research. He has also developed novel proteins and lipids for HPN, longer life containers, investigating hair loss and defining micronutrient requirements in long term IF.
As for Talon – he is a happy four year old who enjoys playing with his trucks, fishing, getting dirty and exerting his big brother rights.
His family are learning to live with the impact that IF has on their lives. “HPN is definitely a life-saver and Talon would not be here today without it,” says Ms McRae.
“There are restrictions obviously, but HPN allows those with IF to lead a relatively normal life, it just takes a lot more work and co-ordination. I can only hope Talon stays healthy and perhaps one day be weaned from HPN as clinical nutrition research and advances are made understanding this rare medical condition.”
This week is Home Parenteral Nutrition awareness week.