Feelings of frustration, isolation and helplessness are common when you have a child who needs a liver transplant. It sometimes helps just to know there are others who understand what you and your family are going through. We've provided a list here of a variety of resources available to you, both within The Children's Hospital of Philadelphia and elsewhere. Please don't hesitate to talk to your liver transplant coordinator or other members of the pediatric liver transplant team if you need more information.
The Connelly Resource Center for Families is a quiet place to take a break or nap, browse through information on healthcare, finances, parenting and education, do laundry, surf the Internet and more. You can talk with other parents whose children are hospitalized. The Family Learning Center in Connelly offers many classes to help families learn new skills they need to care for their children in the hospital or at home.
The Child Life department helps children and family members cope with the healthcare experience through developmentally appropriate activities, education about and preparation for medical procedures, and emotional support.
Feel free to call our transplant coordinators at 215-590-4281 or contact the Liver Transplant Program online with any questions you may have related to your child's liver transplant.
A variety of national organizations offer health information and support for patients and families struggling with chronic liver disease and/or transplant issues. Follow these offsite links to learn more about these organizations:
Your community library and local bookstores can provide suggestions on books generally related to transplant (not necessarily focusing on liver transplant only). Many of the nonprofit national organizations listed above can provide you with suggested reading lists. If you want more detailed information, try inquiring at a medical library associated with a medical school in your area.
While there are few books related specifically to liver transplant, we have found several books helpful:
Lizzy gets a new liver
Author: Lizzy Ribal
Publisher: Bridge Resources
Publication date: June 1997
Out of print
I'm Glad You're not Dead: A Liver Transplant Story
Author: Elizabeth Parr
Publisher: Journey Publishing
Publication date: January 2000
Buy it now at Amazon.com.
It Gets Dark Sometimes: My Sister's Fight to Live and Save Lives
Author: Jeffrey Marx
Publication date: 2000
Get ordering information online.
To the Edge and Back
Author: Chris Klug with Steve Jackson
Publication date: 2004
Buy it now at Amazon.com.
Reviewed by: Elizabeth B. Rand, MD
Date: November 2012