Spina Bifida

Thanks

Michele

There are many forms of neural tube defects ranging from anacephaly (sp?, I'm sorry I am not familiar with this form, but I understand the baby is born with out a brain -which is incompatible with life) to myelomeningocele where the spinal cord is outside the body, to occult spinal dysphrasm, where there is good covering of the "defect" and may or may not be diagnosed at birth. 25% of the population is walking around right now with spina bifida and have no idea they have this. There are some issues that babies born with spina bifida have to face, but thanks to medical interventions, they can lead very normal lives. Actually, you would never know my daughter has spina bifida if you bumped into her on the street.

Most doctors paint a bleek picture for parents. There is absolutely no way of knowing until after the baby is born how severly affected they will be. My daughter had one of the mildest form of spina bifida which was not picked up prenatally. The NS examined her after birth and told me she may not walk, she may not be able to function mentally. This was knowing that she had the mildest form and that the chances were near zero that she would never have these problems. This was with him examining her with his own hands, not looking at her through a black and white screen during an ultrasound. Makes me angry every time I think of this!

My daughter is now in grade one, is one of the brightest in her class. She is incontinent, but is now in underwear thanks to medical intervention. She's my hero.

Pam
mom to daughter with spina bifida, lipomyelomeningocele form, along with tethered cord

http://www.sbhac.ca/index.php?page=faq

Definitions and Descriptions
Spina Bifida
What is Spina Bifida? Spina bifida is a Latin term meaning 'open spine'. Medically it refers to a birth defect where the spine does not form completely . The spina bifida defect may leave several vertebrae deformed in such a way as to expose the spinal cord. The exposure of spinal cord usually results in some damage to it at the point of exposure. Damage at some point along the spinal cord results in limited brain signals to and from muscles and body organs below where the damage has occurred. Limited communication to and from the brain to muscles and body organs frequently results in reduced development of normal body function. Although spina bifida is originally a skeletal defect, there are a significant number of directly related conditions which precipitate from the defect in the spine. People who are born with spina bifida frequently have one or more related defects.

Spina bifida is considered a defect in the Neural Tube (NTD). This Neural Tube Defect occurs during the first four weeks of pregnancy, before a woman will be tested to confirm pregnancy. It is the early development of the defect which makes it both hard to treat and hard to detect prior to ultra-sound tests. The time the 1st ultra-sound is done at about 18 weeks. By this time, permanent damage is already done if a child has a major spina bifida type. Although spina bifida can be detected at the first ultra-sound, the extent of the damage cannot be determined until the child is born. In most cases, the doctor will give the most severe diagnosis attempting to prepare the family for the worst possible case because if the spina bifida is detected at the ultra-sound stage, the effects on a child will usually be significant. But, it is important to note that the effects from spina bifida are extremely varied. They range from severe physical deformation and developmental problems to minor bladder problems usually correctable by surgery. The most common effects are limited use of lower limbs, bowel and bladder limitations, and average mental capability. Spina bifida is usually accompanied by one or more other conditions.