Parents and Caregivers!
The main Transplant Unwrapped Website provides adult-friendly educational content and resources for you to learn more about short bowel, intestinal failure, intestinal rehabilitation, and intestinal and multivisceral transplantation. This site serves as an extension of our main website, primarily providing materials for kids. This page has a few additional resources for parents and caregivers that we hope will help make the journey a bit easier for you and your child.
Links to Transplant Unwrapped Main Site
Are you interested in a variety of useful downloads and handouts for parents and caregivers?
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Short Bowel Syndrome and GI Conditions
What is Short Bowel Syndrome (SBS)?
Short bowel syndrome (SBS) results when the body is not able to properly absorb and digest food normally because a large length of the small intestine is missing or non-functional. This results in the inability of your child to have proper growth and development.
What are the Causes of Short Bowel Syndrome (SBS) in Children?
(not an all-inclusive list, just a sampling of conditions)
In some cases of short bowel, your child is born with the condition:
Volvulus or Malrotation
In other cases, your child may have a disease that requires them to have extensive surgical resection of their bowel, resulting in short bowel:
Necrotizing Enterocolitis (NEC)
For further reading on Short Bowel Syndrome (SBS), visit our main website here.
Helpful Downloads Related to Short Bowel Syndrome (SBS)
Short Bowel Syndrome and Intestinal Rehabilitation Handbook
On-the-go overview of SBS and intestinal rehabilitation.
Overview of Short Bowel Syndrome in Children
Handout with basic info on SBS in children.
Appointment Questions and Checklist
Print this for your first appointment with your child's intestinal care team for helpful reminders on what to tell the team and questions to ask.
What is Intestinal Rehabilitation?
Intestinal rehabilitation is the process of restoring nutritional autonomy. This means weaning from parenteral nutrition (PN) and enteral nutrition (tube feeds), and onto oral feedings. This allows your child to live a life free from PN and its associated complications.
What are the Main Components of Intestinal Rehabilitation?
1. Diet modification
2. Oral Rehydration Therapy
3. Vitamin and Mineral Supplements
5. Surgical Procedures
For further reading on Intestinal Rehabilitation, visit our main website here.
Helpful Downloads Related to Intestinal Rehabilitation
Parent and Caregiver's Guide to Central Lines
Does your child have a central line? Download this guide with useful info and a checklist to keep you organized.
Parent and Caregiver's Guide to Medications
Download this guide for useful tips on getting your child tto take their medication, common medications used in intestinal patients, and other helpful info.
Shot and Eating Reward Charts
Download and print these reward charts to help your child stay on track with their treatment regimen.
Intestinal and Multivisceral Transplantation
What is an Intestinal Transplant?
An intestinal transplant is an operation to replace a diseased or shortened small intestine with a healthy intestine from a donor.
When Might Intestinal Transplant be Considered?
An intestinal transplant may be considered for people with intestinal failure who develop complications from parenteral nutrition (PN), or if PN is not possible.
Intestinal failure is when the intestine is not able to digest and absorb enough nutrients to support your child's growth and daily function.
In some cases, other factors, such as quality of life, are taken into account when considering an intestinal transplant. Each case is individualized and insurance and transplant center approval will vary. Please discuss your child's situation with the care team.
For further reading on Intestinal Transplant visit our main website here.
Helpful Downloads Related to Intestinal and Multivisceral Transplant
Transplant Appointment Checklist
Print this for your first appointment with your child's transplant team for helpful reminders on what to tell the team and questions to ask.
Preparing Your Child
Download this guide for useful information on how to prepare your child for an upcoming surgery or procedure.
Hospital Packing List
Print this packing checklist which has lists for both you and your child.