What is Spina Bifida?

Spina Bifida or "split spine" (SB) is the most common seriously disabling birth defect in the United States. An estimated 5 children are born with SB every day in the US (1 out of every 2340 births).

At conception, the cells of the developing child are a round disk on the wall of the uterus. During the fourth week of pregnancy (often before women even know they are pregnant), that disk rolls in on itself to form a tube which becomes the spinal column; the baby's head develops at one end, the legs at the other and everything else in between.

Note: The spinal column is made up of the bones (or vertebrae) of the spine. The spinal cord is the bundle of nerves that run from the brain, through the spinal column, and to the rest of the body.

In cases of Spina Bifida, that disk of cells on the uterine wall does not completely roll together and close - leaving a gap in the spinal column. The interruption can happen anywhere along the spine; from the cervical to sacral regions. Usually, wherever the split occurs, all the vertebrae below that will be effected.

The higher up the spine that the split occurs, the more severe the consequences may be. Splits at the C1, C2 level can be fatal while people can have SB occur in the sacral level and go their whole lives not knowing they have SB.

There is no precise way to know exactly where the split has occurred while a child is still in the womb. In addition, the nervous system is very complicated and so you cannot simply draw a line through a person's body at the level of their spinal defect and know for certain what they will or will not be able to do. The functional level of SB is often different than the diagnosed level. In other words, a child may have SB occur at T5 but could still have the functionality of a T9 and so on.

There are three classifications of SB:

Spina Bifida Occulta: This is the mildest form of spina bifida. Occulta is the second most common form of SB. Occulta is Latin for "hidden". Many people with this type of spina bifida do not even know they have it, as the condition is asymptomatic in most cases.

Meningocele: This is the second mildest form of SB and also the least common. Individuals with meningocele are unlikely to suffer long-term health problems

Myelomeningocele: This type of spina bifida is the most common and often results in the most severe complications. There is usually some degree of paralysis and loss of sensation below the level of the spinal cord defect.

Parent's Note: We were told during our pregnancy that our daughter had T5-level Spina Bifida, the "Lemon Sign", the "Banana Sign", Scoliosis and two Clubbed Feet. Ours was the second-worst case that our Children's Hospital had seen in a decade. We were told that our daughter would not survive more than a few hours after birth and that if she did she would not be able to breathe or eat on her own. She is now a beautiful 3 year old completing her first year in preschool. In the past 3 years, every SB family I have met has said that their child turned out BETTER (more healthy and whole) than the doctors predicted.

Our Annabelle after a day of surfing. Age 3:

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