Colorectal and Pelvic Malformation Center | Patient Resources

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Boston Children's Child Life Services provides a variety of helpful materials for families and siblings of chronically ill children. We recommend downloading the following information sheets.

• getting ready for your child's hospital experience
• preparing your child for a hospital stay or a procedure
• helping siblings cope with your child's illness

Social work. We recognize that your child's illness can impact their emotional, social, mental, and developmental health. Your social worker is available to provide support to you and your family related to a wide variety of concerns including:

• coping with diagnosis, illness, or hospitalization
• impact of illness on family members
• school or educational concerns
• financial difficulties

Child life specialists. Child life specialists work to enhance patients' emotional, social, and cognitive growth during a hospital visit, taking into consideration each child's family, culture, and developmental needs. They use developmental interventions and play to help patients and families adjust to and understand their health care experiences. Please be in touch with your social worker to obtain a referral to a child life specialist.

Mental health providers. Individuals living with a chronic illness may benefit from having access to mental health care. Our team is available to help connect you with mental health professionals in your specific community and can provide additional education to your mental health professional about colorectal and pelvic malformations to better support your child's emotional, mental, and social health needs.

Please note that neither Boston Children's Hospital nor the Colorectal and Pelvic Malformation Center unreservedly endorses all of the information found at the sites listed below. These links are provided as a resource.

• Bowel Group for Kids is a registered Australian-based charity dedicated to providing emotional support to families of children born with Hirschsprung's disease, imperforate anus, anorectal malformations, and associated conditions.
• Hirschsprung's & Motility Disorders Support Network is an organization that connects families that have children with Hirschsprung's disease or other gastrointestinal motility disorders.
• The Oley Foundation is a national nonprofit organization that strives to enrich the lives of patients dependent on home intravenous nutrition (parenteral) and tube feeding (enteral) through education, advocacy, and networking.
• Parents Helping Parents meets the needs of individuals and their families with any special needs, including illness, accidents, birth defects, neurological conditions, learning or physical disabilities, mental health issues, etc.
• Pull-thru Network (PTN) is one of the largest organizations in the world dedicated to the needs of those born with an anorectal malformation or colon disease and any of the associated diagnoses. PTN offers a private Yahoo email group just for girls ages 11-13. Please contact PullthruNetwork@gmail.com for more information.
• The Sibling Support Project is the first national program dedicated to the life-long and ever-changing concerns of millions of brothers and sisters of people with special health, developmental, and mental health concerns.
• The United Ostomy Associations of America Inc. is a nonprofit organization that supports, empowers, and advocates for people who have had or who will have ostomy or continent diversion surgery.
• The VACTERL Network was established to provide support to families who have a child born with VACTERL/VATER or adults with VACTERL. The purpose of their organization is to share resources, tips, and information among families.
• Wrightslaw offers accurate, reliable information about special education law, education law, and advocacy for children with disabilities and medical needs at school.

Facebook support groups

You can search for and find various Facebook groups intended to serve as a place of support, connection, and information. Consider searching for groups related to your child's specific diagnosis or need.

Camps

• The Center for Courageous Kids uplifts children who have life-threatening illnesses by creating experiences year-round that are memorable, exciting, fun, build self-esteem, are physically safe, and medically sound.
• Victory Junction enriches the lives of children with serious illnesses by providing life-changing camping experiences that are exciting, fun, and empowering, at no cost to children or their families.
• Youth Rally helps teens who have a bowel or bladder dysfunction or ostomy prepare for independence and build a personal support network.