P4.49: Home Parenteral Nutrition: www.Necker-HPN-traveling.com

Abstract

Introduction: In France, the Hôpital Necker-Enfants Malades Home Parenteral Nutrition (HPN) program is the oldest (certified in 1984) and the largest with ~ 40% of the 380 children currently on HPN. We enrolled > 800 infants and children in our program since 1984. In 2018, it supported 156 children (ages: 3mths-17yrs): short bowel syndrome (SBS) (n=78), congenital enteropathy (CE) (n=28), total intestinal aganglionosis (TIA) (n=22) or chronic intestinal pseudo-obstruction (CIPOS) (n=17); miscell.(n=11). We try to offer the most normal life for the child, parents & siblings: family life, school attendance, physical & cultural activities…, and vacations. In France, holidays are sacred…!!. Moreover, some children have their grand-parents living outside France, especially in North Africa, the French islands (Caribean & Indian Ocean), Turkey, Portugal…. Until recent years, holidays outside of France were like an unreachable dream. Thanks to our experience of vacations within France and with our multidisciplinary approach and mutual trust with families, we crossed progressively the French borders. Nowadays, 23 different countries have been visited by 21 families. Methods: the HPN vacations organization involves nurses, MD, pharmacists, psychologist, social worker…. It requires time and should be anticipated at least 2 months before departure. Contacts are established with airlines companies for transporting material in the aircraft both in the cabin and in the hold. Local medical and nursing contacts are established, while medical recommendations are delivered regarding emergency situations and the management of hot weather conditions. Results: In 2018, 20 children went to foreign countries or French Islands. IF causes: SBS (n=9), CE (n=7), TIA (n=4). Children received PN 3 to 7 nights a week, with bags from the French usual provider, completed if needed by a local hospital pharmacy (n=4). Destinations were: Morocco, Algeria, Turkey, Greece, Tunisia, Caribeans, Portugal, Thailand,…Stay in the country ranged from 1 to 8 weeks. Only one child had an harmful event with a dehydration. Conclusion: According to the very successful and enjoyable experience for the families, we do encourage an increasing number of families to do the same whenever financially possible. We suggest our colleagues and friends in charge of a HPN program to set up a “HPN travel agency”…… for offering families great holidays and happiness.