When my newborn son was diagnosed with Down syndrome, I called a pregnancy support hotline for information. The counselor I met there was a bright and funny young woman who put my mind at ease like few people I have met since. She admired my son, complimented both of us, and enjoyed the time we spent together without seeming to be bogged down with concern over the diagnosis or how I might be adjusting to it.
As I left I told her that she was the first person to treat my baby and me like my daughter and I had been treated when she was brand new. She claimed that it was easier for her to look past the diagnosis because she had been born with spina bifida herself, and her life was turning out just fine.
I had not noticed any physical signs of a disability while we had talked, and she said her diagnosis was very late because she did not have obvious symptoms, a blessing in some ways because she had all the opportunities and support she needed growing up as if she did not have a diagnosis at all. On the other hand, she did not have the intervention and support that might have helped with what she called 'some discomfort' related to spina bifida.
Most children with spina bifida are diagnosed at birth, and some, prenatally. Support groups and knowledgeable professionals are available where parents of newly diagnosed children can find information that might be relevant to their sons and daughters. There are several associated conditions that may be present in newborns with spina bifida that require treatment or intervention, including hydrocephalus, Chiari syndrome, bladder and bowel complications, and orthopedic problems.
Browse at your public library, local bookstore or online retailer for
Books about Spina Bifidaor American Girl Doll of 2012 McKenna and her Lavender-Colored Wheelchair or American Girl NEW Berry Wheelchair - Red with Inner Star Logo
Cover Girl: Emily’s Modeling Debut A First for Parents Magazine
Walk-N-Roll Twitter Party for Spina Bifida October 2012
Welcoming Babies with Spina Bifida by Linda Rowley
Family Village Resources on Latex Allergies
Prenatal surgery promises brighter future for babies with spina bifida
Spina Bifida blog for web site updates, news articles, medical studies
Spina Bifida Research Blog
Family Village Resources for Spina Bifida
Blaine Harrison, Rock/Indie Lead Singer of the Mystery Jets
National Institute of Neurological Disorders
Family Village Resources for Chiari Malformation
Frequently Asked Questions - Conquer Chiari Website
Univ of MO Information Chiari Type 1 Malformation
World Arnold Chiari Malformation Association
Finding Strollers, Walkers and Wheelchairs for Children