Personal Homepages Personal Homepages Spina Bifida can affect ANYONE'S family!! Chances are, at some point of your life you will encounter someone with this condition. It may even be a child of yours! So take a few minutes and learn more about it.
My son, Cristiano Nicola was born by C section at 12.43 pm on December 11, 1997, in Allegheny General Hospital, Pittsburgh, PA. He weighed 3.5 pounds and was 16.5 inches long. He was 7 weeks premature. His prematurity was due to my developing preeclampsia/toximia, which took a turn for the worse on December 10. At that point, they knew they had to deliver him, and Cristiano held on for one more day. (Btw.. he was born one day before his big brother's birthday!)
The doctors at Allegheny General Hospital in Pittsburgh were great. If the baby were only either premature OR with the Spina Bifida, odds would have been much better. They told me that day that his chances were only 20% to live. But, being the fighter that he is, he arrived home January 28, with an apnea monitor as well as oxygen and pulse oximeter monitor. It was a bit overwhelming, but now they're gone and he's doing great!
Just a few interesting tidbits about Spina Bifida before you get started...
It is more common than muscular dystrophy, multiple sclerosis, and cystic fibrosis combined.
Most families who have a child with spina bifida have NO history of this!
The cause is unknown.
It occurs within the first 3-4 weeks of pregnancy.
Most people with spina bifida also have latex allergies.
Visit these sites for more information....
Associations and Organizations
The Spina Bifida Association of America - Information about annual conferences produced by SBAA, membership information, links to other sites, etc.
Spina Bifida Association of Western PA - Contains information about programs and other important information.
The Association for Spina Bifida and Hydrocephalus in England. Good descriptions of hydrocephalus and very good information packets by mail, etc.
Medical Pages
Pediatric Neurosurgery of Harvard Medical School
Pediatric Neurosurgery Home Page of Columbia-Presbyterian Medical Center
Advocacy Pages
Reed Martin - Attorney Martin presented the case (Tatro) for clean intermittant catheterization to be done at school. His site answers questions about education law.
Educational Information
LD Online - Lots of information about learning disabilities for families and adults. Good information, links, graphics, etc.
The Special Ed Advocate - Attorney Pete Wright and his wife Pam, a social worker, are parents of a son with learning disabilities. This their site. They have a downloadable weekly newsletter called the Special Ed Advocate. Info about educational rights, questions and answers from parents, updates on new federal regulations, and advice.
Nonverbal Learning Disabilities Line - The BEST source of information about NLDL. It includes links and articles about developing plans for school.
Publications
Exceptional Parent Magazine - Good information about adaptive equipment, toys, recreation programs, books, etc.
General Information Pages
Children with Spina Bifida - A resource page for parents website maintained by the mother of a son who has spina bifida and hydrocephalus. Lots of information and links, and a section about Welcoming babies with spina bifida.
Job/Career Sites
Social Security Administration - Eligibility requirements, programs, and services.
Last updated February 2002