Spina bifida

Spina Bifida in Grand Rapids, Michigan

Spina bifida is Latin for “split spine.” It is one of a group of serious birth defects called neural tube defects (NTDs). In spina bifida, the back part of the developing embryo does not fold and close normally. Instead of being protected inside the spine and muscles, parts of the spinal cord and nerves may be exposed or poorly protected.

For families in Grand Rapids and West Michigan, understanding spina bifida, how it is diagnosed, and what local treatment options exist can help you make informed decisions during pregnancy and after birth.

What Is Spina Bifida?

In a typical pregnancy, the neural tube (which becomes the brain and spinal cord) closes very early—usually by the 4th week after conception. In spina bifida, this tube does not close fully in the spine.

Because of this:

The spinal cord and nerves may be exposed or only thinly covered.
Nerves that serve areas of the body below the defect often do not work properly.
This can lead to:
- Weakness or paralysis in the legs
- Loss of sensation in the lower body
- Problems with bladder and bowel control
- Orthopedic (bone and joint) problems

Spina bifida can occur anywhere along the spine—neck, chest, mid‑back, or lower back. Lesions in the mid‑back to upper lumbar area often cause more severe paralysis and complications.

Other Neural Tube Defects: Anencephaly

The other main type of neural tube defect is anencephaly, in which the brain and upper part of the skull do not develop properly. All babies with anencephaly are either stillborn or die shortly after birth.

Both spina bifida and anencephaly are more likely when the mother does not get enough folate (folic acid) very early in pregnancy.

Spina Bifida and Pregnancy in Grand Rapids

How Common Is Spina Bifida?

Neural tube defects, including spina bifida, occur in about 1 in every 800 pregnancies. The exact cause is not fully understood, but both genetic and environmental factors are involved.

Over the past few decades in the United States, including Michigan, the number of babies born with spina bifida has dropped due to:

Increased use of folic acid supplements before and during early pregnancy
Fortification of grain products with folic acid
Improved prenatal screening and diagnostic testing

Role of Folate (Folic Acid)

Folate (folic acid) is a B‑vitamin that is critical for early brain and spine development.

The recommended dose for most women:
- 0.4–0.5 mg (400–500 micrograms) of folic acid daily
- Start at least 1 month before conception and continue through the first 3 months of pregnancy
Higher doses may be recommended if you are at higher risk (see below). Always discuss this with your Grand Rapids OB/GYN or primary care provider.

Foods naturally rich in folate include:

Asparagus
Spinach and other leafy greens
Oranges and orange juice
Bananas
Legumes (beans, lentils, peas)

Folate‑fortified foods include:

Many breakfast cereals
Enriched breads and grain products (check the label for “folic acid”)

In Michigan, where pregnancies may be planned around work, school, or seasonal factors (for example, avoiding late‑pregnancy travel in winter), it is still important to start folic acid before you are pregnant if there is any chance you could conceive.

Who Is at Higher Risk?

You may be at higher risk of having a baby with spina bifida or another neural tube defect if:

You have had a previous pregnancy affected by an NTD
You have a family history of NTDs on either side of the family
You have a close relative (parent, sibling, or child) with an NTD
You take certain anti‑seizure medications, such as valproic acid (Depakote) or similar medicines

Women in these high‑risk groups often need a higher dose of folic acid, prescribed by a healthcare provider.

If you live in Grand Rapids or Kent County, talk with:

Your OB/GYN at Spectrum Health, Trinity Health Grand Rapids, Metro Health, or Mercy Health
A maternal–fetal medicine specialist (high‑risk pregnancy doctor)
Your primary care provider or a genetic counselor

They can help you understand your personal risk and the right folic acid dose for you.

Types of Spina Bifida

Spina Bifida Aperta (Open Spina Bifida)

In open spina bifida, also called myelomeningocele, the spinal cord and nerves are exposed or only covered by a thin membrane.

This is usually detected before birth.
If not diagnosed prenatally, it may be noticed at birth as an open area or a large soft lump on the baby’s back.
This lump can contain:
- Spinal cord
- Nerves
- Often fatty tissue (called a lipomeningocele or lipomeningocoele)

Urgent surgery is typically needed within the first few days of life to:

Close the opening
Reduce the risk of infection
Prevent excessive leakage of cerebrospinal fluid (CSF)
Protect the spinal cord and nerves from further damage

In some cases, the defect is covered by skin and not obvious at birth. These forms may be discovered later in childhood or adulthood. Surgery may be needed, but it is often less urgent because the spinal cord and nerves are not exposed.

Symptoms and Possible Complications

The severity of spina bifida depends on:

The type of defect
The location along the spine
The size and complexity of the lesion

Common problems associated with spina bifida include:

Motor problems
- Weakness or paralysis in the legs
- Walking difficulties or need for mobility aids
Sensory loss
- Reduced or absent sensation in the legs and feet
- Higher risk of burns, injuries, and pressure sores (especially in Michigan winters when space heaters and hot baths are common)
Bladder and bowel problems
- Urinary incontinence or retention
- Bowel incontinence or constipation
Sexual function
- Some degree of sexual dysfunction, especially related to erection and ejaculation in males
Spinal deformities
- Scoliosis (spine curves into an “S” shape)
- Other posture and alignment issues
Tethered cord
- The spinal cord sticks to the area of the original lesion and becomes stretched as the child grows
Arnold–Chiari malformation
- An abnormality at the back of the brain and upper spinal cord
- Can affect breathing, swallowing, eye movements, and the flow of cerebrospinal fluid

Spina Bifida and Hydrocephalus

The brain and spinal cord are surrounded by cerebrospinal fluid (CSF), which cushions and nourishes the nervous system.

Most people with spina bifida have an Arnold–Chiari malformation.
About 80% develop hydrocephalus (“water on the brain”), where CSF does not flow or absorb properly and builds up in the brain.

Treatment of Hydrocephalus

Hydrocephalus is often treated early with a shunt:

A thin tube is placed into the brain’s fluid spaces (ventricles).
The shunt drains excess fluid to another part of the body (usually the abdomen or sometimes the heart), where it can be safely absorbed.

Even though the brain may look structurally different on imaging, many people with spina bifida have normal intelligence and can thrive with appropriate support. However, learning difficulties or other brain function challenges are not uncommon and may require educational and therapeutic services.

Diagnosis of Spina Bifida in Grand Rapids

Prenatal Screening and Diagnosis

Most cases of spina bifida are detected before birth. In West Michigan, pregnant women can access prenatal screening through:

OB/GYN practices and maternal��fetal medicine services at:
- Corewell Health (formerly Spectrum Health) in Grand Rapids
- Trinity Health Grand Rapids
- Metro Health – University of Michigan Health
- Mercy Health clinics in the region

Common tests include:

Ultrasound
- About 90% of spina bifida cases can be seen on ultrasound by 18 weeks of pregnancy.
Maternal blood tests
- Measuring alpha‑fetoprotein (AFP) can suggest a higher risk of neural tube defects.
Magnetic Resonance Imaging (MRI)
- Sometimes used to get a more detailed view of the baby’s spine and brain.

If spina bifida is suspected or confirmed, you will usually be referred to:

A high‑risk pregnancy (maternal–fetal medicine) specialist
A pediatric neurosurgeon
A neonatologist (specialist in newborn care)
A genetic counselor

These specialists work as a team to help you understand your options and plan for delivery and newborn care in Grand Rapids.

Treatment Options for Spina Bifida

There is no cure for spina bifida, but many treatments and management strategies can greatly improve quality of life.

Newborn and Early Childhood Care

Surgery to close the lesion

For open spina bifida, surgery is usually done within the first few days of life.
The goal is to close the opening, protect the nerves, and reduce infection risk.

Shunt placement

If hydrocephalus is present, a shunt may be placed to drain excess fluid from the brain.

Orthopedic surgery

Children may need operations on their legs, hips, or feet to improve alignment and mobility.

Mobility aids

Depending on the level of paralysis and strength, children may use:
- Braces
- Walkers or crutches
- Wheelchairs (part‑time or full‑time)

In Grand Rapids, pediatric rehabilitation and physical therapy services are available through major health systems and specialized pediatric clinics.

Bladder and Bowel Management

Bladder and bowel issues are common but can be managed with:

Dietary changes and scheduled toileting
Enemas or bowel programs to manage fecal incontinence
Bladder surgery to:
- Increase bladder size
- Tighten or reconstruct muscles
Intermittent self‑catheterization
- Using a small tube to empty the bladder regularly
Continence pads or diapers
In some cases, urinary or fecal diversion bags (stomas) may be necessary

Regular monitoring of kidney and bladder function is critical to prevent long‑term damage.

Ongoing Monitoring

People with spina bifida usually need lifelong follow‑up for:

Shunt function (if present)
Spine health (scoliosis, tethered cord)
Kidney and bladder health
Skin care (especially with reduced sensation)
Learning and developmental progress

Living With Spina Bifida in West Michigan

Children and adults with spina bifida in Grand Rapids can access:

Pediatric and adult neurology and neurosurgery
Rehabilitation medicine, physical and occupational therapy
Urology and gastroenterology for bladder and bowel care
Orthopedics for bone and joint issues
School‑based services and individualized education plans (IEPs)
Social work and care coordination

Cold, snowy Michigan winters can pose extra challenges for mobility, transportation, and skin care (due to heavier clothing and reduced circulation). Working with local therapists and care teams can help families plan for safe mobility, accessible housing, and adaptive equipment.

Local Resources in Grand Rapids and Kent County

If you or your child is affected by spina bifida, or if you are pregnant and have questions:

Primary Care Provider or OB/GYN
Your first contact for folic acid counseling, prenatal screening, and referrals.
Corewell Health (Spectrum Health) – Grand Rapids
Offers maternal–fetal medicine, pediatric neurosurgery, and comprehensive pediatric care.
Trinity Health Grand Rapids, Metro Health – University of Michigan Health, Mercy Health
Provide obstetric care, diagnostic imaging, and specialty referrals.
Kent County Health Department
Offers maternal and child health programs, prenatal education, and connections to community resources.
Website: search “Kent County Health Department maternal child health”
Grand Rapids Public Health and community clinics
Can help with access to prenatal vitamins, folic acid, and early pregnancy care.

You can also ask your provider for referral to regional or national Spina Bifida Clinics and support organizations for additional guidance and family support.

Key Points to Remember

Spina bifida is a neural tube defect where parts of the spine and spinal cord do not form properly.
The other main NTD is anencephaly, a severe brain and skull defect that is not compatible with long‑term survival.
Spina bifida cannot be cured, but early surgery, shunt placement, and long‑term management can significantly improve outcomes.
The risk of neural tube defects is about 1 in 800 pregnancies.
Taking folic acid daily for at least 1 month before pregnancy and during the first 3 months can prevent most neural tube defects.
Women in high‑risk groups may need a higher dose of folic acid, under medical supervision.
In Grand Rapids, families have access to advanced prenatal diagnosis, pediatric specialists, and rehabilitation services through major health systems and public health resources.

If you are planning a pregnancy or are already pregnant in the Grand Rapids area, talk with your healthcare provider about folic acid, prenatal screening, and any family history of neural tube defects to reduce your risk and support a healthy pregnancy.