Recommended Reading for Patients and Families
Many of these books can be checked out from the Family Resource Center at Children's or found at your local library or bookstore.
Family Faces: A Newsletter for Families of the Craniofacial Center
This newsletter provides information on current events, changes at the hospital, upcoming opportunities for training, support and issues that affect patients and families of the Craniofacial clinic.
Understanding Cleft Lip & Palate: A Guide for New Parents (Free video)
Candid conversations with parents are interwoven with insightful information from some of the world's leading craniofacial experts in this film about cleft lip and palate. Request a free video available in English and Spanish.
Children with Facial Difference: A Parent's Guide
Hope Charkins
The mother of a child with Treacher Collins syndrome, Charkins is also a clinical social worker. Her book is an excellent resource, dealing with concrete needs such as insurance while also offering guidance about psychological and coping concerns.
Autobiography of a Face
Lucy Grealy
This book details the personal experience of Grealy, who was treated for bony facial cancer in childhood and went on to have reconstructive facial surgery. Provides detailed descriptions of the experience of facial difference as well as a child's perspective on medical care.
Changing Faces: The Challenge of Facial Disfigurement
James Partridge
James Partridge is the director of a counseling and advocacy organization in England known as Changing Faces. His writings are directly influenced by his own personal experience.
At age 19, he was in a car accident and sustained significant burn injuries to his entire body, including his face. His personal experience and professional work since the establishment of his organization are detailed in this very helpful volume.
Babyface: A Story of Heart and Bones
Jeanne McDermott
This book presents a very moving story of a mother's experience after the birth of her child who was diagnosed with Apert syndrome. An excellent description of the joy and the agony experienced by families who must deal with medical complexity while falling in love with their child.