Tim Weaver's glass has always been half full. At least that is how the recent high school graduate, soon to be college student, from Naperville, Ill., has chosen to approach life. Tim was diagnosed with Hirschsprung's disease shortly after birth, due to his gastrointestinal system not developing properly. When he was three days old, surgeons removed all but 51 centimeters of his bowel, which meant Tim could not consume nutrition through normal feeding and intravenous (IV) nutrition would be required to survive for the remainder of his life.
Baxter, a leading provider of nutritional therapy solutions and devices, and the Oley Foundation, the only Home Parenteral Nutrition (HPN) consumer-based organization in the United States, are recognizing HPN consumers, like Tim, during HPN Awareness Week, Aug. 5-11.
HPN or IV nutrition is a way to feed patients who are unable to consume nutrients orally or enterally (tube-fed) due to a health condition or non-functioning gastrointestinal tract.
The opportunity for HPN consumers to live a 'normal' life was not always the case. Tim's diagnosis with Hirschsprung's disease meant his large intestine was blocked, which causes the bowels and abdomen to become swollen and can lead to infection, intestinal rupture, malnourishment and dehydration. When Tim was two weeks old, the physicians felt "his condition was incompatible with life." Fortunately, Tim's parents, Ann and Mike disagreed, got a second opinion and started Tim on nutritional treatment plan.
Fast forward 17 years later, Tim is preparing to attend college this fall at the Illinois Institute of Technology – granted with more preparation than most college freshmen. He will require a dorm room with adequate storage for his IV nutrition supplies, access to medical care and weekly delivery of therapy.
"When faced with significant challenges, patients such as Tim have chosen to approach life optimistically," says Mary Hise, PhD, RD, director of medical affairs for Nutrition at Baxter. "Fortunately, today's nutritional therapies, like those provided by Baxter, and resources from the Oley Foundation are supporting HPN consumers in leading fuller lives."
Tim and his family have spent his lifetime learning to prepare for such life events as college. "Tim's diagnosis and early days of treatment were extremely difficult," says Ann Weaver. "We were trained to administer HPN at the hospital and later by a nurse in our home. It was an overwhelming responsibility to correctly prepare and administer PN for my newborn baby."
Unlike adults, children have a particularly high risk of malnutrition because of their high nutritional requirements.1 Children require adequate nutrition to foster both cognitive and physical development. Tim received IV nutrition for the first several years as a part of his treatment, to ensure development.
Much of Tim's childhood was interrupted with frequent trips to the hospital and multiple surgeries. The family learned to adapt, and Tim's parents fostered his positive attitude and taught him to take an active role in managing his condition.
While many children rely on their parents to help them hook up to and disconnect from their nutritional feedings, Tim has been taking charge of his own care since the age of six. Ann, his primary caregiver and regional coordinator for the Oley Foundation, taught Tim how to practice aseptic technique to help avoid bloodstream infections. Tim continues to need IV nutrition periodically, and when he does, he often administers Baxter's nutritional therapy at home.
"Thanks to this therapy, people like Tim can still thrive and lead active, productive and fulfilling lives," Ann says. "Tim is able to do most of the things he likes."
Tim travels with his family, plays the tuba and bass guitar, and he enjoys golf, bowling and baseball. Beyond the logistics of managing his treatment, Tim carries a medical letter describing his condition when traveling or attending sporting events. The letter and the ability to explain his condition is sometimes necessary to get his treatment backpack through airport security and into entertainment and sports venues. He has become an expert traveler, learning how to pack and ship supplies so that his therapy remains intact upon arrival.
Tim's management skills come from a strong family support system from his parents and brother, along with advocacy programs provided by the Oley Foundation, the only home HPN consumer-based organization in the United States. The Weavers are not only members, but Ann also serves as a regional educator for the foundation to help other parents faced with similar situations.
"Sharing our family's experience and supporting other families as they learn to manage life as a HPN consumer is important," Ann says. "It's really important the manufacturers of nutritional therapies and the Oley Foundation realize the value they provide families like ours. If it were not for them, my son wouldn't be here."
The Oley Foundation (www.oley.org) was established in 1983 to address the unique needs of patients and professionals involved in HPN support, through education, outreach, and networking. Tim typically attends the Oley Foundation's annual conference.
"Tim is not defined by his disease or by HPN," says Joan Bishop, executive director, the Oley Foundation. "He understands his healthcare needs, has a fantastic support system, a great attitude and a strong desire to make a difference. I sincerely believe Tim is the face of hope for those in the HPN community considering college."
Tim offers this advice to other children new to nutritional treatments, "being on PN or EN feedings isn't the end of the world. Don't let it hold you back."
1Koletzko B, Goulet O, Hunt J, et al. ESPGHAN / ESPEN Guidelines on Paediatric Parenteral Nutrition. JPGN. 2005. Link: http://espghan.med.up.pt/joomla/position_papers/con_22.pdf