October is Spina Bifida Awareness Month!

One goal for myself with this blog is to promote awareness and education around Spina Bifida.  My hope is that the more people that know and understand the details of Spina Bifida the more tolerance people will have when they see someone in a wheelchair, leg braces or other visual difference.

Here is a photo of Olivia's back.  Her surgery was 24 hours after birth and this picture was taken a few days later:

Photo of Olivia's shunt put in 4 days after she was born:

Information on SB:
Here is some info directly from the SBA site:  (http://www.spinabifidaassociation.org/site/c.evKRI7OXIoJ8H/b.8277225/k.5A79/What_is_Spina_Bifida.htm)

• "What is Spina Bifida?
• Spina Bifida is the most common permanently disabling birth defect in the United States.
• 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. 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.
• What are the different types of Spina Bifida?
• 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, hyperpigmented patches on the back, 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 usually does not cause harm, and has no visible signs. The spinal cord and nerves are usually fine. People find out they have it after having an X-ray of their back. It is considered an incidental finding because the X-Ray is normally done for other reasons. However, in a small group of people with SBO, pain and neurological symptoms may occur. Tethered cord can be an insidious complication that requires investigation by a neurosurgeon.
• Meningocele
• A meningocele 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), also called Spina Bifida Cystica
• 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. 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."

Physical Complications from SB:

The most common physical complications can include:

Limited to no movement from the waist down, bowel/bladder issues, gastrointestinal issues, and lack of spinal fluid draining from the brain (hydrocephalus).

Other complications can include:

Having a latex allergy, learning disabilities, skin breakdown, depression, obesity, and sexual issues.

SB Prevention:
The cause of SB is not yet known but there are some related studies showing ties to the mother's inability to properly breakdown and store folic acid.  Unfortunately this is not something tested before women get pregnant  so if you are in the numbers of women that have this problem it goes undetected.

What Can You Do?: Talk to your doctor about the potential risks, your family history and get their recommendations.  My doctor recommended I start taking prenatal vitamins with high amounts of folic acid as early as possible.  I plan on starting to take them well before I start trying to get pregnant again and I am even thinking well before I stop taking birth control.  There is no guarantee this will avoid your baby having Spina Bifida but it can make a difference.  I have also decided to take prescription folic acid (made to be broken down/ stored better than OTC versions) before future pregnancies now that I know my body does not store it properly.

Donate:

If you would like to donate to help Olivia directly we would ask that you donate to Spina Bifida of San Diego (spinabifidasandiego.com) here:

https://www.helpsdkids.org/sbsd

If you would like to donate to the national organization for Spina Bifida the info is here:

http://www.spinabifidaassociation.org/site/c.evKRI7OXIoJ8H/b.8029637/k.96AE/Make_a_Difference.htm

BE HAPPY. LAUGH. ENJOY CHAOS.