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Updates in pediatric intestinal failure and transplant

159.1 - Updates in pediatric intestinal failure and transplant: Educational strategies and neurodevelopmental assessment

Presenter: Mary Gallotto, Colleen Nespor, Stephanie So, Beverly Kosmach-Park, , USA, Canada
Authors: Mary Gallotto, Colleen Nespor, Stephanie So and Beverly Kosmach-Park

Webinar Summary:

This webinar will focus on aspects of patient care outcomes within intestinal rehabilitation and transplant.  The topics presented will provide an overview of successful educational interventions for caregivers who are learning central line care and home TPN administration.  Additionally, the webinar will include an overview of neurodevelopmental outcomes in this patient population.  This webinar is being presented by the Allied Health Committee of IRTA. 

Mary Gallotto's Biography:

Mary Gallotto graduated from Northeastern University in 1984 and is currently enrolled in the University of Massachusetts Amherst, perusing a master’s degree in nursing education. She is a certified pediatric nurse; sits on the vascular access committee at Boston Children’s hospital and is instrumental in keeping the hospital central venous catheter policies and procedures up to date. She is a member of the evidenced based mentor/mentee program at Boston Children’s Hospital and will continue to create best practice experiences for caregivers and patients being discharged on Home Parenteral Nutrition.


  • Mary will educate the audience how and why the five formal teaching sessions were developed for the patient being discharged home on Parenteral Nutrition (PN).
  • She will demonstrate that home parenteral nutrition, (HPN) teaching is integral to post discharge safety and that close communication between all providers is essential to ensure teaching proceeds in a smooth step-by-step fashion.
  • She will discuss quality benchmarks needed to understand how specific discharge teaching interventions impact important patient centered outcomes, such as central line associated blood stream infection, (CLABSI) rates, readmission rates, cost of care and quality of life.

Colleen Nespor's Biography:

Colleen has been a pediatric nurse for 35 years and a clinical nurse specialist for 27 years.  For the past 15 years she has been in her current role.  Being a CNS for this population has created many opportunities to improve lives for children living with intestinal failure.   Care of central lines, feeding tubes and nutritional and supplement maximization are the core of her practice.


  • Identify 2 elements of  breaches encountered when presenting to an ED with a central line
  • Identify 2 areas parents reported as positive results from use of central line care card
  • Identify 3 important elements for a "central line care card"

Stephanie So's Biography:

Stephanie has been working as a physiotherapist in the Liver/Intestinal Transplant and GIFT program at SickKids for over 15 years. She has a special interest in neurodevelopmental outcomes of children with Intestinal Failure. Additionally some of her research has explored motor skills, physical activity levels and participation in both children post liver transplant and children with intestinal failure.

Neurodevelopmental Outcomes in Intestinal Rehabilitation and Transplant Background: Advancements in neonatal care, medical and surgical management and the introduction of multidisciplinary intestinal rehabilitation programs (IRP) has resulted in improved survival for children with intestinal failure. However, these children may present with multiple comorbidities such as: prematurity, low birth weight, parenteral nutrition dependence, multiple abdominal operations, recurrent sepsis, frequent and prolonged hospitalization and intestinal failure associated liver disease. Some children eventually require liver, intestinal or multi-visceral transplants.


  • Explore the existing research related to neurodevelopmental outcomes in children with intestinal failure and intestinal/multi-visceral transplant
  • Describe the impact of specific intestinal failure related co-morbidities on neurodevelopment
  • Discuss the role of the multi-disciplinary team in addressing both short and long term neurodevelopmental needs in this population.


  1. Merritt RJ, Cohran V, Raphael BP, et al. Intestinal rehabilitation programs in the management of pediatric intestinal failure and short bowel syndrome. J Pediatr Gastroenterol Nutr. 2017, 65(5):588-596.
  2. So S, Patterson C, Gold A, et al. Early neurodevelopmental outcomes of infants with intestinal failure. Early Hum Dev. 2016; 101:11-16.
  3. Chesley, PM, Sancehz, SE. Melzer, et al. Neurodevelopmental and Cognitive Outcomes of Children with Intestinal Failure. JPGN 2016, 63:41-45
  4. Thevenin, DM, Baker, A., Kato, T. et al. Neurodevelopmental Outcomes of Infant Multivisceral Transplant recipients: A Longitudinal Study. Transplant Proceeding. 2006,38:1694-1695
  5. Thevenin, DM, Mittal, N., Kato, T. et al., Neurodevelopmental Outcomes of Infant Intestinal Transplant recipients Transplant Proceeding. 2004,36:3019-320

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