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,” as 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.
* Please consult with your healthcare provider before making any changes to your health regimen
How can Spina Bifida Be Screened?
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 disabilities.
If you’d like more information on how PASCO can help provide support, contact us today.
Frequently Asked Questions
What should I ask my health care provider if my child is diagnosed with Spina Bifida?
When discussing the care of children with Spina Bifida, it’s crucial to talk to your health care provider about the potential medical care needs your child may have. Discuss the types of physical disabilities they may face and the community resources available for support.
How can I improve bowel control for someone with Spina Bifida?
Bowel control can be a challenge for those with Spina Bifida. Consulting with a healthcare professional can provide you with guidance on methods and special equipment that may assist in managing this condition effectively.
What types of physical activity are safe for people with Spina Bifida?
Engaging in physical activity is important for people with Spina Bifida. Individuals can work with a department of physical medicine and rehabilitation to understand what activities are safe and beneficial, ensuring continuity of care and promoting mobility and health.
Are there any specific health care services for adults with Spina Bifida?
Adult health care for individuals with Spina Bifida can differ from pediatric care. It is important to transition to primary care providers who have experience in managing long-term medical conditions associated with Spina Bifida, including the monitoring of cerebrospinal fluid and the ongoing assessment of physical medicine needs.
Can Spina Bifida Occulta be serious?
Spina Bifida Occulta is often considered the mildest form of Spina Bifida. However, it is still important to monitor for any changes or symptoms that may suggest complications. Regular medical check-ups are recommended to maintain optimal health.
What is involved in Bifida surgery before birth?
In cases of severe type of Spina Bifida, such as Myelomeningocele, surgery may be performed before birth. This procedure aims to close the spinal opening and reduce the risk of further damage to the spinal cord from amniotic fluid.
How is excess fluid managed in babies with Spina Bifida?
Excess fluid, particularly cerebrospinal fluid in the case of Hydrocephalus associated with Spina Bifida, is typically managed through surgical interventions. These surgeries involve the placement of shunts to drain the fluid and relieve pressure.
What should parents of children with Spina Bifida know about their family history?
Knowing your family history can be essential, as genetic factors might increase the likelihood of having a child with Spina Bifida. Discuss your family medical history with your healthcare provider to assess any increased risks and consider genetic counseling.
What community resources are available for families dealing with Spina Bifida?
Many communities offer resources such as support groups, special education services, and access to medical care tailored to the unique challenges faced by individuals with Spina Bifida and their families. Contact local health departments or organizations dedicated to Spina Bifida for more information.
How can continuity of care be ensured for someone with Spina Bifida?
Ensuring continuity of care involves regular follow-ups with healthcare teams that specialize in Spina Bifida, transitioning smoothly from pediatric to adult health care providers, and maintaining up-to-date health records that are accessible to all members of your medical team.
