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.

Family Village Resources for Spina Bifida
http://www.familyvillage.wisc.edu/lib_spin.htm


Family Village Resources on Latex Allergies
http://www.familyvillage.wisc.edu/lib_latx.htm


Welcoming Babies with Spina Bifida by Linda Rowley
http://www.waisman.wisc.edu/~rowley/sb-kids/wbwsb.html

Blaine Harrison, Rock/Indie Lead Singer of the Mystery Jets
http://www.disabilitynow.org.uk/news/news_dec_2006_003.htm

National Institute of Neurological Disorders
http://www.ninds.nih.gov/disorders/disorder_index.htm

Family Village Resources for Chiari Malformation
http://www.familyvillage.wisc.edu/lib_arnd.htm

Frequently Asked Questions - Conquer Chiari Website
http://www.conquerchiari.org/FAQ.htm

Univ of MO Information Chiari Type 1 Malformation

World Arnold Chiari Malformation Association
http://www.pressenter.com/~wacma

Finding Strollers, Walkers and Wheelchairs for Children
http://www.bellaonline.com/articles/art9507.asp

Inclusive P.E. for Children with Special Needs
http://www.bellaonline.com/articles/art46155.asp

Speech Therapy, Feeding Therapy and Early Intervention
http://www.bellaonline.com/articles/art47296.asp

Transition to Preschool from Early Intervention
http://www.bellaonline.com/articles/art49696.asp

IEP Preparation - Teacher Support
http://www.bellaonline.com/articles/art44746.asp

New Mother - Newly Diagnosed Child
http://www.bellaonline.com/articles/art33557.asp

Dads, Complicated Pregnancies and Childbirth
http://www.bellaonline.com/articles/art47718.asp

We welcome discussion of any of these topics at the SNC forum at
http://forums.bellaonline.com/postlist.php?Cat=0&Board=58

Special Needs Children at Bella Online

Books on Spina Bifida at Amazon.com

Ordering Amazon.com Gift Certificates or Tivo Video Download here will help support the Special Needs Children website