Let’s dive in and discover everything researchers know about Spina Bifida and what it’s like to care for someone with this birth defect.
What is Spina Bifida?
Spina Bifida affects approximately 166.000 people in the United States, according to the Spina Bifida Association. This neural tube defect is often diagnosed before or at birth, and occurs when the neural tube doesn’t close all the way during early development. When this happens, the spinal cord is and nerves are damaged, causing a range of disabilities.
Commonly referred to as the “snowflake condition,” no two Spina Bifida patients are alike. This is due to the size and location of the opening in the person’s spine. Depending on the nerves and parts of the spinal cord that are affected, a person can experience a variety of physical and intellectual disabilities.
What are the Types of Spina Bifida?
Three types of Spina Bifida are most commonly seen. Here’s a brief description of each type.
Myelomeningocele
Also known as Spina Bifida Cystica, this is the most serious type of Spina Bifida, and it’s the type that most people are familiar with. Myelomeningocele occurs when the spine doesn’t fully close. When this happens, a sac of fluid forms through an opening in the baby’s back, containing part of the spinal cord and nerves. Oftentimes, the spinal cord and nerves are damaged, causing the individual to have moderate to severe disabilities that may include intellectual disabilities as well as incontinence and a loss of feeling in the legs.
Meningocele
Meningocele occurs when the spinal cord doesn’t close all the way, allowing a sac of fluid to form through the opening in the baby’s back. However, the fluid-filled sac doesn’t contain the spinal cord or nerves. In this case, little nerve damage occurs and a person may only experience mild disabilities.
Spina Bifida Occulta
The mildest form of Spina Bifida is also sometimes referred to as “hidden Spina Bifida,” since around 15% of healthy people have it and don’t even know it. It’s diagnosed when a small gap is discovered in the spine. There is no opening or sac, and the spinal cord and nerves are not usually damaged at all. Oftentimes, people are diagnosed with this condition when they have an X-ray performed for other health problems.
Other less common types of Spina Bifida include:
What are the Risk Factors of Developing Spina Bifida?
According to CDC, researchers still don’t know what causes Spina Bifida to occur, but they agree that it’s likely due to a combination of environmental and genetic causes. They do, however, agree that there are several preventative measures that can be taken before and during pregnancy to help prevent a baby being born with this birth defect.
Women who may become pregnant can:
- Take 400 micrograms (mcg) of folic acid every day, since Spina Bifida occurs during the first few weeks, often before a woman even knows she’s pregnant.
- Talk to your doctor about prescriptions and OTC medications.
- Control conditions like diabetes and obesity before becoming pregnant.
- Avoid overheating during pregnancy.
- Treat fevers during pregnancy immediately by taking acetaminophen.Women who have already given birth today a baby with Spina Bifida are also encouraged to take 4,000 mcg (or 4.0 mg) of folic acid a few months before and during their subsequent pregnancies.
What are the Symptoms of Spina Bifida?
There are several screening tests available during pregnancy that can help a doctor to determine whether a baby will have Spina Bifida. These include:
In some cases, Spina Bifida isn’t diagnosed until after a baby is born. In these cases, it can be diagnosed when the baby is born with a patch of skin with hair or a small dimple on his or her back.
What are Other Health Conditions Associated with Spina Bifida?
Since every baby born with Spina Bifida presents differently, they can develop a number of different conditions. Some common conditions associated with Spina Bifida are listed below.
How a Family Caregiver Can Assist Someone with Spina Bifida?
Every case of Spina Bifida is unique, but knowledge and support are the best ways to care for someone with this birth defect. If you’re taking care of a loved one with Spina Bifida, it’s important to take care of your own health as well. PASCO’s Family Caregiver Program was created to provide support and financial compensation to caregivers of people with debilitating health conditions.
If you’d like more information on how PASCO can help care for you, contact us today.