Home Parenteral Nutrition Awareness Week
Life without Food: Home Parenteral Nutrition Awareness Week, 3rd-9th August
Each year, nearly 30,000 babies are born prematurely in New Zealand and Australia with immature gastro intestinal tracts that cannot absorb enough food to sustain life.
This condition is known as intestinal failure (IF). In order to nourish these babies, hospitals often use a life-saving medical technology called parenteral nutrition (PN)whereby a sterile solution, containing all the nutrition these babies require to thrive, is introduced into the infant’s body through their veins.
The majority of these babies will eventually be able to take oral nutrition and grow into normal healthy children and adults. Unfortunately, a small number will have permanent IF and will require PN for the rest of their lives. One such example is Lisa Martin, recently featured in The Devonport Flagstaff, whose intestines are unable to absorb nutrients from food, necessitating use of PN when in hospital 9 years ago.
With support from a multidisciplinary team of health professionals in Auckland, this complex therapy can be managed at home, when it is called Home Parenteral Nutrition (HPN). There are restrictions, of course. Complications from her underlying disease or occasionally associated with the HPN, can necessitate frequent trips to hospital. But most people on HPN, like Lisa, can achieve a relatively good quality of life. Lisa is friendly and thoughtful and, despite the challenges, she has completed some university work in Psychology and Property. Currently she works part-time in a family property management business. HPN has also enabled Lisa to learn to play several musical instruments and sing in a choir. Lisa is not cured, she still cannot eat, but has managed her own HPN for over 9 years nowand also provides support to others on HPN by lending an ear to peers in need.
There are approximately
200 children and adults with IF, like Lisa, living
HPN across New Zealand and Australia, which means they can often feel pretty isolated. Many are now members of the charitable support group, called Parenteral Nutrition Down Under (PNDU), www.parenteralnutitiondownunder.com PNDU offers a wealth of information and networking support to those on HPN ‘down under’, including a private email forum and Facebook group, an e-newsletter called ‘Dripline’, hints & tips, travel information, DVDs, social gatherings and an HPN workshop is planned for November 2014.
In collaboration with several support groups overseas, PNDU is celebrating HPNAwareness Week, August 3rd- 9th 2014, with a series of publicity initiatives.