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Management Manual for Parents

(c2002–Edited by Meg Hefner, M.S. & Sandra Davenport, M.D.)

The CHARGE Syndrome Management Manual for Parents breaks down CHARGE into some of its components. The Medical sections are by body system. Each topic includes a For Physicians and For Parents section. “For Physicians” lists the features of CHARGE within that specialty. “For Parents” reviews the normal structure and function of that organ system, what problems can be seen in CHARGE, and what might be done about it. The Developmental sections include information about development and education, with special emphasis on sensory deficits.

The Manual was assembled in 2001. All of the basic information about features seen in CHARGE is accurate, but some of the management and treatment information may be out of date. For more current information, see the CHARGE syndrome book and the special issues of the American Journal of Medical Genetics (2005) and American Journal of Medical Genetics (2017). 

Read More About What You Get in the Manual

What do you get in the manual?

      • History of the CHARGE Syndrome Foundation
      • Stories from 10 families, newborn to adult
      • Medical information
      • Revised diagnostic criteria
      • Prenatal ultrasound information
      • Sections for your doctors (to photocopy and take to them)
      • Sections for parents (so you understand what’s going on)
      • Developmental and Educational information
      • Glossary (17 pages of defined medical terms)
      • Resources
      • Deafblind
      • Educational
      • Medical
      • Medical visit pad, to help organize your medical records
      • Minnesota Developmental Timeline to chart your child’s progress


I. Introduction
History (2 pages)
Stories (30 pages)

II. Priorities
What is most important for your child? (1 page)

III. Medical Aspects of CHARGE
Introduction to Medical Section (1 page)
Diagnosis, Genetics and Prenatal Diagnosis (10 pages)
Cranial Nerves and Brain (5 pages)
Sensory Loss and Development (4 pages)
Eyes (5 pages)
Ears and Hearing (9 pages)
Choanal Atresia (5 pages)
Cleft Lip and Palate (6 pages)
T-E Fistula and Esophageal Atresia (5 pages)
Airway (2 pages)
Swallowing and Feeding (6 pages)
Heart (6 pages)
Renal and Urinary (6 pages)
Genital and Endocrine (7 pages)
Muscles and Bones (4 pages)
Growth (6 pages)
Adolescence (3 pages)
Life Expectancy (6 pages)
IV. Development and Education in CHARGE
1. Introduction to the Development and Learning (1 page)

2. Multiple Influences on Development and Learning (13 pages)

  • Impact of Medical Features on Development
  • Physical Influences on Development
  • Influence of Sensory Loss: Communication Bubble
  • Behavior as Communication

3. Minnesota Development Timeline (6 pages)

4. Teams (13 pages)

  • Introduction to Teams
  • Teams and Resources
  • Educational Teams and Your Educational Team
  • Circle of Friends
  • Person-Centered Planning

5. Assessment (13 pages)

  • Assessment of Individuals with CHARGE
  • Psychoeducational Evaluation
  • Do’s and Dont’s for Educators

6. Plans of Action and Therapies (39 pages)

  • Orientation and Mobility
  • Sensory Integration
  • Physical Therapy and Occupational Therapy
  • Physical Education and Recreation

7. Finding Help (2 pages)
V. Glossary 

VI. Resources 

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