August 7 to 13 is Home Parenteral Nutrition (HPN) Awareness Week. With the goal of demystifying HPN and helping people better understand what these patients go through every day, we’ll be sharing inspiring stories throughout the week, plus we’ll introduce you to the Children’s Intestinal Rehabilitation Program (CHIRP) team at our hospital. Here’s a bit of background on HPN and our team to get you started for the week.
What is intestinal failure?
It happens when the intestines can’t digest and absorb enough fluids and nutrients for a child to live, grow and develop normally. This can occur when part of the intestine is sick and has to be taken out during surgery or when the intestines don’t work normally. Children with intestinal failure can’t tolerate a full normal diet, so they need fluids and nutrition to be given directly into their blood through an IV line (known as Parenteral Nutrition, or PN). Some children need PN for a few months, many need it for a few years. Children are usually connected to their PN for 12 to 20 hours every day.
What does this mean for families?
Children with intestinal failure usually spend the first several months of life in hospital, often needing repeated major abdominal surgeries, countless blood tests, numerous procedures and blood transfusions. Before being able to take their child home, parents have to learn to administer PN on their own, a high-risk task normally reserved for nurses. It’s not unusual for children with intestinal failure to be readmitted frequently during the first 2 to 3 years of life, with life-threatening blood infections or symptoms of bowel obstructions; even a common cold can significantly disrupt their intestinal function and result in a long hospital admission. Even when they graduate off PN, children with intestinal failure continue to be at risk for nutritional deficiencies, recurrent bowel obstructions, and many other problems. For this reason, the CHIRP team continues to monitor them closely.
Who is the CHIRP team?
The Children’s Intestinal Rehabilitation Program (CHIRP) team at BC Children’s Hospital was created in 2010 and includes a pediatrician-nutritionist, a gastroenterologist, a general surgeon, a dietitian, a nurse, an occupational therapist and a social worker. The team works closely together to help restore and optimize intestinal function to minimize the need for parenteral nutrition. Just a few years ago, intestinal failure was a devastating and often fatal condition. However, with advances in care and with the support of CHIRP teams, kids with intestinal failure not only survive, they grow and develop normally with full and active lives.
To share your story with us, please visit bcchf.ca/share. Or, to support the Children’s Intestinal Rehabilitation Program, please make a donation here.