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HomeResources and SupportA-Z resourcesSpina Bifida and Hydrocephalus

Spina Bifida and Hydrocephalus

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Below you will find a variety of resources to help you better understand, cope with and/or support someone with spina bifida and/or hydrocephalus.

Books 

Cerebral ventricular shunts: some questions, some answers. 

Vancouver: British Columbia's Children's Hospital, 1996.

Children with spina bifida: a parent's guide.

Bethesda, MD: Woodbine House, 1999.

Written by an expert team, this book addresses common concerns of parents about their child's development and condition.

A guide to hydrocephalus / McCowan, Anne Marie.

Toronto: Spina Bifida & Hydrocephalus Association of Ontario, 1992.

This book explains what hydrocephalus is, the causes and the treatment. The book also covers such topics as shunts and shunt failure; diagnostic tests; the consequences of hydrocephalus; professionals involved; and medications commonly used for seizure disorders.

Hydrocephalus: a guide for patients, families and friends / Toporek, Chuck. 

Sebatopol, CA: O'Reilly & Associates, 1999.

Text provides clear advice on living with hydrocephalus. Helps parents with choosing a neurosurgeon and what to expect in regards to treatments.

Living with spina bifida: a guide for families and professionals / Sandler, Adrian.

Chapel Hill, NC: University of North Carolina Press, 1997.

Addressing the challenges raised by spina bifida in a positive and practical manner, this book will aid anyone seeking the information necessary to build a strong, productive parent-professional partnership. It will serve as a resource for families as well as for doctors, health care workers, teachers, therapists, and other professionals involved in caring for children with spina bifida.

Spinabilities: a young person's guide to spina bifida. 

Bethesda, MD: Woodbine House, 1997.

A guide to coping with the medical, self-care, and emotional issues of spina bifida, with an emphasis on becoming as independent as possible.

Understanding spina bifida.

Toronto: Bloorview MacMillan Centre, 1998.

Whether you are a parent, service provider, or an individual with spina bifida, you need accurate, up to date information so you can make informed decisions regarding care, treatment and management in the present, as well as anticipate and plan for the future.

Websites 

  • Spina Bifida – MedlinePlus from the U.S. National Library of Medicine 
  • Spina Bifida & Hydrocephalus Canada 
  • Hydrocephalus Canada
  • L'Association de spina bifida et d'hydrocéphalie du Québec
  • Kids Health – Information for Kids, Teens and Parents from the Nemours Foundation

  • Spina Bifida Association

  • Spina Bifida Fact Sheet – National Institute of Neurological Disorders and Stroke

  • Spina Bifida - About Kids Health

  • Hydrocephalus – MedlinePlus from the U.S. National Library of Medicine

  • Pediatric Hydrocephalus Foundation

  • Hydrocephalus Fact Sheet – National Institute of Neurological Disorders and Stroke

  • Hydrocephalus and Treatment: Shunts and Endoscopic Third Ventriculostomy – About Kids Health 

  • Hydrocephalus – Healthline

Local contacts 

Hydrocephalus Canada
1-800-387-1575
Ottawa contact: 613-841-8173 or 613-248-3619 to 613-698-8173

 

L'Association de spina bifida et d'hydrocéphalie du Québec
1-800-567-1788
info@spina.qc.ca

Disclaimer

These resources are for educational purposes only. If you have any questions, ask your health-care provider.

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