When Your Child is Diagnosed With Spina Bifida

If your child was just diagnosed with Spina Bifida, your excitement about your new baby may turn into shock, frustration, or anger, not knowing why this could possibly happen to you. You may need to believe in a higher power to get you through the reality, that there may be something special, deep inside you. Many Spina Bifida parents find that they are actually a chosen group, one that is capable of overcoming their challenges and can see the many blessings these children bring.

Spina Bifida is an embryo abnormality that is normally detected in the first trimester, as it can start in the first four weeks, before a woman even knows that she is pregnant. Spina Bifida is a neural tube defect that occurs in 1 out of 1000 newborns in the United States, and 1 out of 750 in Canada. For some unknown reason, the embryo's neural tube, (spine, brain and vertebral column) fails to develop properly, causing varying degree of permanent damage to any one of these areas.

One of the questions that expectant parents of a child diagnosed with Spina Bifida are asking is, "how will this affect the child?" and the answer to that varies. You will need to become acquainted with the terminology often used, which actually refers to what region it is believed will be affected, which in turn, can determine the level of paralysis.

The spine (or spina) is composed of five areas, (and corresponding vertebrae):

o Cervical (C)-the neck-nearest the skull with 7 vertebrae

o Thoracic vertebrae (T)-next 12 vertebrae below the neck, support the ribs

o Lumbar vertebrae (L)-5 vertebrae also known as the lower back

o Sacrum

o Coccyx, (the tailbone)

You may hear other Spina Bifida parents referring to their child as having L2, (2nd vertebrae of the Lumbar) or T10, (10th vertebrae of the Thoracic), which refers to the highest area where the defect occurred. It is important to understand the degrees, to understand the scope of the problem. If you have any problems understanding the diagnosis, ask your doctors to keep explaining it to you in very simple terms.

Within the first 24 hours of life, surgery will be performed to close the opening to the spine. This can be a hard part for many parents because they just want to hold their baby and comfort it. It is a natural bonding period they are looking forward to; yet, the baby is normally put into surgery, almost immediately. Babies recover with great speed from the closure surgery. Seeing the spirit of these young babies fight through such a traumatic surgery makes many parents come to realize what a special gift they and their child they have been given.

Your child may develop hydrocephalus and may need to have a shunt placed as well. Hydrocephalus is having too much fluid in the brains ventricles. Your neurosurgeon will watch carefully for signs of hydrocephalus developing. It is very common for children with Spina Bifida to also have hydrocephalus.

Many parents may turn to some sort of Spina Bifida support group, which has the answers from experienced people that have gone through, or are going through the same experience as you. There is a saying, "what doesn't kill us only makes us stronger", and some Spina Bifida parents may have said this, only to find the satisfaction and pride they have found in their child is unequaled by any ordinary child.