Spinal Cord Injury Coping and Support

When your child has a spinal cord injury, your family is grappling with many concerns and questions. Not only are you focused on meeting all of your child's medical needs; you are also facing a significant emotional and psychological toll that can affect every member of the family.

In addition to the clinical information offered on this page, Children's has several other resources designed to give your family comfort, support and guidance:

Patient and family resources at Boston Children's Hospital

•   Boston Children's Center for Continence of Urine and Bowel (CUB) brings together experts in gastroenterology,
    general surgery, neurosurgery and urology to help children of all ages with bladder and bowel incontinence.

•   Our Neuromotor Therapy Program is devoted to assisting children with spinal cord injuries and other traumatic
    neurological injuries maximize their motor skills.

•   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     

•   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

•   The Experience Journal was designed by 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 living with
       medical conditions and going through treatment.

•   Children's Department of Psychiatry publishes a free booklet, “Helping Your Child with Medical Experiences: A
    Practical Parent Guide”
(.pdf file). Topics in the booklet include:

           -  talking to your child about her condition
           -  preparing for surgery and hospitalization
           -  supporting siblings
           -  taking care of yourself during your child's illness
           -  adjusting to life after treatment

•   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

•   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.

•   Boston Children's International Center is a dedicated resource for patients and families from countries outside
    the United States. The center can provide assistance with everything from reviewing medical records to setting
    up appointments and locating lodging.

    Contact the center by phone at 1-617-355-5209 or via e-mail at international.center@childrens.harvard.edu.   

Helpful links

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

Apparelyzed: Spinal Cord Injury Peer Support
Christopher & Dana Reeve Foundation
Greater Boston Chapter of the Spinal Cord Injury Association
National Spinal Cord Injury Association
New Mobility Magazine
SPINALCORD Injury Information Network
Spinal Cord Injury Manual for Patients and Families
Spinal Injuries Association (UK)