Wednesday, October 22, 2008

October is Spina Bifida Awareness Month...

This is Micah and his cousin Darci. Darci just turned 7 years old on October 6. She is one of my sister's daughters, and she too has Spina Bifida. Darci is more involved physically than Micah is: she has full leg braces and can walk and get around a room with a walker, but when going places like the zoo/mall/park, etc., she uses her wheelchair. Fortunately, Darci has never had any shunt issues, where Micah is on his 3rd shunt. There are a lot of similarities from child to child, but each child is affected differently even if the lesion is located in the same spot. Medicine will tell you that Spina Bifida is not genetic, but what are the chances of two sisters having children with Spina Bifida? A lot of our ancestory is from Whales, and there is a higher incidence of Spina Bifida is Whales. We do know from genetic testing, that we do not absorb folic acid like the normal person. So, when I was pregnant with Luca, I was taking 10 times the amount of folic acid that one would take if they were pregnant.

Darci and Micah are the best of friends!!! My sister lives in Wisconsin, so we do not get to see them as much as we would like. Darci and Micah are inseparable when they are together, and they call each other 'Hun' and 'Babe'... :-) Darci is Hun, and Micah is Babe.


What is Spina Bifida?

Spina Bifida literally means “split spine.” Spina Bifida happens when a baby is in the womb and the spinal column does not close all of the way. Spina Bifida is the most common birth defect that disables people for life. Every day, about eight babies born in the United States have Spina Bifida or a similar birth defect of the brain and spine.

What causes Spina Bifida?

No one knows for sure. Scientists believe that genetic and environmental factors act together to cause the condition.

Are there different types of Spina Bifida?

Yes. They are:

Occult Spinal Dysraphism (OSD)

Infants with this have a dimple in their lower back. Because most babies with dimples do not have OSD, a doctor has to check using special tools and tests to be sure. Other signs are red marks, tufts of hair or small lumps. In OSD, the spinal cord may not grow the right way and can cause serious problems as a child grows up. Infants who might have OSD should be seen by a doctor, who will recommend tests.

Spina Bifida Occulta

It is often called “hidden Spina Bifida” because about 15 percent of healthy people have it and do not know it. Spina Bifida occulta does not cause harm, has no signs and the spinal cord and nerves are fine. People usually find out they have it after having an X-ray of their back.


It causes part of the spinal cord to come through the spine like a sac that is pushed out. Nerve fluid is in the sac, and there is usually no nerve damage. Individuals with this condition may have minor disabilities.

Myelomeningocele (Meningomyelocele)

This is the most severe form of Spina Bifida. It happens when parts of the spinal cord and nerves come through the open part of the spine. It causes nerve damage and other disabilities. Seventy to ninety percent of children with this condition also have too much fluid on their brains. This happens because fluid that protects the brain and spinal cord is unable to drain like it should. The fluid builds up, causing pressure and swelling. (This is known as Hydrocephalus.) Without treatment, a person’s head grows too big, and may have brain damage. Children who do not have Spina Bifida can also have this problem, so parents need to check with a doctor.
(Micah and Darci both have this type of Spina Bifida.)

How is Spina Bifida Treated?

A child with meningomyelocele usually is operated on within two to three days of birth. This prevents infections and helps save the spinal cord from more damage.

A child with meningocele usually has it treated with surgery, and more often than not, the child is not paralyzed. Most children with this condition grow up fine, but they should be checked by a doctor because they could have other serious problems, too.

A child with OSD should see a surgeon. Most experts think that surgery is needed early to keep nerves and the brain from becoming more damaged as the child grows.

Spina Bifida occulta does not need to be treated.

What Can You Do to Prevent Spina Bifida?

Women who are old enough to have babies should take folic acid before and during the first three months of pregnancy. Because half of the pregnancies in the United States are unplanned, the Spina Bifida Association asks women to take a vitamin with 400 mcg (0.4 mg) of folic acid each day during the years of their lives when they are possibly able to have children. Women who have a child or sibling with Spina Bifida, have had an affected pregnancy or have Spina Bifida themselves should take 4000 mcg (4.0 mg) of folic acid for one to three months before and during the first three months of pregnancy.

What is Folic Acid?

Folic acid is a vitamin that the body needs to grow and be healthy. It is found in many foods, but the man-made or synthetic form in pills is actually better absorbed by our bodies.

What Conditions are Associated with Spina Bifida?

Children and young adults with Spina Bifida can have mental and social problems. They also can have problems with walking and getting around or going to the bathroom, latex allergy, obesity, skin breakdown, gastrointestinal disorders, learning disabilities, depression, tendonitis and sexual issues.

What Physical Limitations Exist?

People with Spina Bifida must learn how to get around on their own without help, by using things like crutches, braces or wheelchairs. With help, it also is possible for children to learn how to go to the bathroom on their own. Doctors, nurses, teachers and parents should know what a child can and cannot do so they can help the child (within the limits of safety and health) be independent, play with kids that are not disabled and to take care of him or herself.

Can Spina Bifida be Detected Before Birth?

Yes. There are three tests.

1. A blood test during the 16th to 18th weeks of pregnancy. This is called the alpha-fetoprotein (AFP screening test). This test is higher in about 75–80 % of women who have a fetus with Spina Bifida.

2. An ultrasound of the fetus. This is also called a sonogram and can show signs of Spina Bifida such as the open spine.

3. A test where a small amount of the fluid from the womb is taken through a thin needle. This is called maternal amniocentesis and can be used to look at protein levels.

Parents should know that no medical test is perfect, and these tests are not always right.

Can Children with Spina Bifida Grow Up and Live a Full Life?

Yes. With help, children with Spina Bifida can lead full lives. Most do well in school, and many play in sports. Because of today’s medicine, about 90 percent of babies born with Spina Bifida now live to be adults, about 80 percent have normal intelligence and about 75 percent play sports and do other fun activities.

We thank God every day for Micah's health, and that he does not have a severe case of Spina Bifida. If you would meet Micah, you would not know that anything is even wrong with him. We went to the Spina Bifida clinic yesterday at Riley Children's Hospital. He is doing so well, and they do not have any concerns as far as learning dissabilities, etc., that we were told that he does not need to be seen for another year!!! PTL!!!!!!!!!


Big Al, the gal said...

Thank you for sharing this information. Until now, I knew nothing about Spina Bifida. All four of your kids are amazing and you and your husband seem to have a magic touch with them.

One Crowded House said...

thanks for all of this info- I did not know some of it! Your kids are all amazing- and you and your hubby must be pretty amazing as well!

Wendy Campbell said...

Where in WI does your sister live?