Online Support Groups
Clubs & Camps
Spina Bifida Websites
An Open Letter to Parents Expecting a “Crippled Kid” – This is a letter written by a 10-year old girl in a wheelchair. When her mother told her that the majority of parents of children with spina bifida, and other debilitating birth defects, choose to terminate their pregnancies rather than have children who are disabled, she was upset. The thought that anyone would think her life, or those of her friends, was somehow deficient, made her decide to write a letter to parents who are expecting a “crippled kid.”
I Want To Learn About Spina Bifida – This is an amazing resource, covering everything from general information about Spina Bifida to detailed information about specific surgeries and treatments. Every article includes pictures, diagrams and illustrations to describe all aspects of Spina Bifida.
My Bleeding Ink – Everything You Ever Wanted to Know About SB – This is a blog written by a 40 year old man with Spina Bifida. His articles provide a wealth of information with an entertaining twist. Don’t miss the letter to his mother. So sweet!
Shake It Off – Spina Bifida Video – This video shows kids born with Spina Bifida doing things that many of their parents were told they would never do – crawl, walk, jump, dance – all to the tune of Taylor Swift’s song, “Shake It Off”. The video opens with the words, “Spina Bifida Limits Our Potential. We have poor quality of life. We suffer daily. That’s what people say. . .”
Tell The Truth About Spina Bifida – This informative editorial gives all the statistical facts that should have been given to you by your OBG & MFM. Two doctors involved in the MOMs study, fed-up with the misinformation being perpetrated on newly diagnosed parents, wrote this editorial to present the true story and to encourage OBGs and MFMs to do the same. It closes with the words, “Healthcare providers should not allow their own lack of knowledge to magnify their patients’ fears of delivering a crippled child. We urge all those involved in prenatal care to learn the facts, and tell the truth about spina bifida.”