Caring for Someone with Spina Bifida

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:

Alpha-Fetoprotein (AFP) Screening

This test is usually performed during the 16th and 18th week of pregnancy. A simple blood draw will determine whether the baby's fetoprotein levels are high, and it boasts an accuracy rate of over 75%.

Amniocentesis:

Your doctor can use a thin needle to extract a small amount of amniotic fluid to detect whether protein levels are high.

Ultrasounds:

Your doctor can perform ultrasounds to look at the baby's spine to help determine whether it has closed correctly.

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.

Hydrocephalus

Also known as “water on the brain,” up to 90% of babies with Myelomeningocele are born with this condition. When this occurs, the baby has an increased amount of fluid in and around his or her brain, causing pressure and swelling. Doctors will closely monitor the condition and surgeries may be necessary to insert shunts that can help the fluid drain.

Tethered Spinal Cord

A tethered spinal cord is attached to the spinal canal, where typical spinal cords are allowed to float freely. In the case of a tethered spinal cord, a person may experience physical symptoms like back pain, scoliosis, incontinence and nerve damage as they grow. Luckily, surgery can help.

Incontinence

People with Spina Bifida often cannot control when they release their bladder or bowels. In these cases, it can lead to health problems like UTIs. Doctors can help provide a treatment plan that may include a catheter or fiber supplements so the patient can remain in control.

Latex Allergy

People with Spina Bifida are at an increased risk of having a latex allergy. For babies, this includes rubber nipples and pacifiers.

Open Spina Bifida

When a pregnant mother discovers that her unborn baby has Myelomeningocele, the doctor may suggest performing surgery before it is born. This procedure can be risky to mom and baby, but closing the baby’s spine in utero can prevent further damage to its spinal cord and nerves.

Mobility Problems

Many people with Spina Bifida need mobility assistance. Depending on the location of the person’s birth defect and its severity, a person may be able to walk freely, or they may need braces, crutches or a wheelchair to get around. There are plenty of options to help people move independently, even if they experience paralysis of the legs.

Skin Conditions

Since some people with Spina Bifida don’t have sensation in certain areas of their bodies, they may experience skin conditions. Some of these conditions may include bruises, dry skin and even pressure sores from braces and wheelchairs.

Cognitive Impairments

Depending on the location and severity of one’s Spina Bifida, impact on cognition may vary. . This can cause learning difficulties, vision problems, and even mental health problems like anxiety and depression.

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.