Spina Bifida (Myelodysplasia) Program

Resources and support

When your child is diagnosed with spina bifida, the questions, acronyms and terms 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 Children's

• Children’s Clinical Genetics Program provides diagnostic services and genetic counseling for patients and families with birth defects and other developmental problems. Please call 857-218-4637 to learn more.
   
• The hospital’s Gait Laboratory uses state-of-the-art diagnostic technologies to evaluate children with complex walking difficulties. Please call 617-573-2203 for more information.
   
• Children’s Augmentative Communication Program provides comprehensive evaluation and treatment services for children with conditions affecting communication abilities. Call 781-216-2209to learn more.
   
• Children’s Center for Continence of Urine and Bowel is aspecial program bringing together experts from multiple disciplines—such as urology, gastroenterology and neurology—to assess and treat children with partial or complete incontinence related to congenital problems of the brain, spine, anorectal system or urological system. Please call 617-355-6055for more information.
   
• Children’s Complex Care Services deliver essential medical care to children with birth defects, genetic disorders and other multifaceted health care needs. Call 617-355-6162 for more information.
   
• 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 byChildren’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 cardiac disease, heart transplants and many other medical experiences.
   
• Children’s Pediatric 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
     
• Children’s Department of Psychiatry offers a free booklet, “Helping Your Child with Medical Experiences: A Practical Parent Guide”. (Adobe Acrobat required) Topics in the booklet include:
• • talking to your child about his or her condition
  • preparing for surgery and hospitalization
  • supporting siblings
  • taking care of yourself during your child’s illness
  • adjusting to life after treatment
     
• 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 for Families 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 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.
   
• 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 01-617-355-5209 or via e-mail at international.center@childrens.harvard.edu.