Craniofacial Anomalies Program Patient Resources

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Contact the Craniofacial Anomalies Program

When your child is diagnosed with a craniofacial anomaly, the questions, acronyms and sense of worry can seem endless—and sometimes overwhelming. Browse through the sections below for some helpful information that can give you the answers, advice and support you're looking for.

Patient resources at Boston Children's

  • Boston Children’s Behavioral Medicine Clinic helps children who are being treated on an outpatient basis at the hospital—as well as their families—understand and cope with their feelings about:
    • being sick
    • facing uncomfortable procedures
    • handling pain
    • taking medication
    • preparing for surgery
    • changes in friendships and family relationships
    • managing school while dealing with an illness
    • grief and loss
       
  • The Experience Journal was designed by Boston Children’s psychiatrist-in-chief, David DeMaso, MD,  and members of his team. This online collection features thoughts, reflections and advice from kids and caregivers about going through many types of medical experiences.
     
  • Boston Children’s Psychiatry Consultation Service is comprised of expert and compassionate pediatric psychologists, psychiatrists, social workers and other mental health professionals who understand the unique circumstances of hospitalized children and their families. The team provides several services, including:
    • short-term therapy for children admitted to one of our inpatient units
    • parent and sibling consultations
    • teaching healthy coping skills for the whole family
    • educating members of the medical treatment team about the relationship between physical illness and psychological distress
  • Boston Children’s Center for Families is dedicated to helping families locate the information and resources they need to better understand their child’s particular condition and take part in their care. All patients, families and health professionals are welcome to use the Center’s services at no extra cost. The center is open Monday through Friday from 8 a.m. to 7 p.m., and on Saturdays from 9 a.m. to 1 p.m. Please call 617-355-6279 for more information.
     
  • The Boston Children’s chaplaincy is a source of spiritual support for parents and family members. Our program includes nearly a dozen clergy members—representing Episcopal, Jewish, Lutheran, Muslim, Roman Catholic, Unitarian and United Church of Christ traditions—who will listen to you, pray with you and help you observe your own faith practices during your child’s treatment.

 

Additional Resources for Families

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Boston Children's Center for Families
617-355-6279

Helps families locate the information and resources they need to better understand their child’s particular condition and take part in their care. All Boston Children’s patients, families and health professionals are welcome to use the Center’s services at no extra cost.

Behavioral Medicine Clinic
617-355-6688

Helps children who are being treated on an outpatient basis at Boston Children’s—as well as their families—understand and cope with their feelings about:

  • having a chronic condition
  • facing uncomfortable procedures
  • handling pain
  • taking medication
  • preparing for surgery
  • changes in friendships and family relationships
  • managing school while dealing with a medical condition

AmeriFace
Provides information and emotional support to individuals with facial differences and their families and increases public understanding through awareness programs and education.

EarCommunity
A warm and supportive community for those with microtia and other conditions affecting the ears. Provides helpful information about parent advocacy, self-advocacy and patient advocacy.

FACES: The National Craniofacial Association
Provides financial support for non-medical expenses to patients traveling to a craniofacial center for treatment. Eligibility is based on financial and medical need.

Foundation for Faces of Children
A New England-based, not-for-profit, 501(c) 3 organization that providesclear, accurate information and other educational resources to children born with craniofacial conditions and their families. The Foundation was started by Boston Children’s Hospital plastic surgeon John B. Mulliken, MD, and a handful of parents whose children were receiving treatment at Boston Children’s.

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Information and Support for Parents and Families

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Please note that neither Boston Children’s Hospital nor the Craniofacial Anomalies Program at Boston Children’s unreservedly endorses all of the information found at the sites listed below. These links are provided as a resource.

 

General craniofacial anomaly resources

Cleft lip and cleft palate resources

Craniosynostosis resources

Hemangioma/vascular malformation resources

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Information and Support for Teens and Younger Children

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Please note that neither Boston Children’s Hospital nor the Craniofacial Anomalies Program at Boston Children’s unreservedly endorses all of the information found at the sites listed below. These links are provided as a resource.

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The future of pediatrics will be forged by thinking differently, breaking paradigms and joining together in a shared vision of tackling the toughest challenges before us.”
- Sandra L. Fenwick, President and CEO

Boston Children's Hospital 300 Longwood Avenue, Boston, MA 02115 617-355-6000 | 800-355-7944

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