When You Have Spina Bifida
What happens when you have Spina Bifida?
Because of spinal cord damage, people with Spina Bifida often need crutches, braces or wheelchairs, as well as physical therapy, in order to attain mobility. They may also experience bowel and bladder complications. Food allergies, pressure sores and skin injuries (due to lack of feeling in the extremities) can also occur.
Sometimes surgery is necessary.
If a child is born with a lesion, or opening on the back, a neurosurgeon will close it shortly after birth. In addition, the majority of infants born with Spina Bifida require surgery to relieve the pressure of hydrocephalus, or fluid on the brain. Hydrocephalus is controlled by a surgical procedure called “shunting,” which relieves the fluid build-up by redirecting it into the abdominal area. Here are some other common types of surgery:
- Orthopedic surgery, to correct clubbed feet, or some other abnormality of the lower limbs
- Bladder surgery to improve capacity and function
- A tethered cord release, if the base of their spinal cord becomes tangled in scar tissue created by the closure of the lesion at birth
It is difficult to generalize about the amount of surgery a person with Spina Bifida might have throughout a lifetime; a few have no surgery, and others have many surgeries.
Since diagnosis happens many times early in the pregnancy, the Genetic Counselor will distribute information and options to the parents. Fetal Surgery, or prenatal surgery to repair the opening in the back is an option. After several medical institutes such as Vanderbilt and CHOP were performing this surgery and were showing great promise, the Management of Myelomeningocele Study (MOMS) was performed. In February, 2011, the results were published and made national news. Currently, there are several centers in the US that offer this surgery, including Texas.
A latex (rubber) allergy that causes watery eyes, wheezing, rashes and swelling is another common effect of Spina Bifida. People with a latex allergy have to avoid things that contain this form of rubber, including catheters, elastic bandages, baby bottle nipples, pacifiers and balloons. Click here to see the latest Latex product list.
Many people with Spina Bifida have no learning problems and do very well in school. However, studies show that some particular learning differences are more common among persons with Spina Bifida. These learning problems might be difficulties in abstract mathematics and areas requiring high organizational skills. It is important that parents and teachers recognize any problem early and take steps to help the child, so that school can be a successful experience. Most large Spina Bifida clinics, like Texas Scottish Rite Hospital, have current educational research and can help parents find a diagnostician to identify the problem. They can also help by providing informational materials to classroom teachers. Contact your school district’s special education coordinator to get more information about classroom help that is available for your child. There are also many educational resources available for parents and teachers on the SBA website.
For more information on Spina Bifida, please visit the CDC website by clicking here or contact us at 972-238-8755.