Children with Spina Bifida

Children with Spina Bifida
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. Many babies with spina bifida have latex allergies and react to contact with rubber from birth.

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

4 Things You Should Expect With a Special Needs Pregnancy

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

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

Blaine Harrison, Rock/Indie Lead Singer of the Mystery Jets

National Institute of Neurological Disorders

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

You Should Also Read:
New Mother - Newly Diagnosed Child
Dads, Complicated Pregnancies and Childbirth
Asking More from Medical Professionals

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