Central Nervous System Birth Defects (Neural Tube Defects) in Grand Rapids, Michigan

Central nervous system (CNS) birth defects are most often neural tube defects (NTDs). These include:

  • Spina bifida
  • Anencephaly
  • Encephalocele

These conditions are present at birth and occur when there is a problem with the early development of a baby’s brain and/or spinal cord.

Families in Grand Rapids, MI may learn about these conditions during pregnancy through prenatal testing at local health systems such as Corewell Health (formerly Spectrum Health), Trinity Health Grand Rapids, Metro Health – University of Michigan Health, or Mercy Health.

The Central Nervous System and the Neural Tube

The central nervous system (CNS) includes:

  • The brain
  • The spinal cord

Both are:

  • Wrapped in a thin lining called the meninges
  • Surrounded by a protective fluid called cerebrospinal fluid (CSF)

During early pregnancy, the CNS begins as a simple structure called the neural groove, which folds to form the neural tube. This tube later develops into the baby’s brain and spinal cord.

  • By about day 28 after conception, the neural tube should be fully closed.
  • If the tube does not close properly at any point along its length, a neural tube defect occurs.

How Neural Tube Defects Develop

As the neural tube “zips up” along its length:

  • If it fails to close in the back, spina bifida can occur.
  • If it fails to close at the head, anencephaly or encephalocele can occur.

The position of the open area along the neural tube determines which type of defect develops and which parts of the brain or spinal cord are affected.

In many cases, NTDs can be detected during pregnancy with:

  • Prenatal ultrasound
  • Occasionally, amniocentesis (testing a sample of amniotic fluid)

These tests are commonly offered through maternal-fetal medicine and genetics clinics at Grand Rapids hospitals and specialty centers.

Risk Factors for Neural Tube Defects

NTDs are believed to result from a combination of genetic and environmental factors. Known or suspected risk factors include:

1. Folate (Folic Acid) Deficiency

Folate is a B-group vitamin that is essential for early brain and spinal cord development.

  • If a woman does not have enough folate before conception and in early pregnancy, the risk of NTDs increases.
  • Taking folic acid supplements before pregnancy and during the first weeks of pregnancy can significantly reduce the risk.

Research shows that if folate is taken:

  • Before conception and
  • For at least the first 4 weeks of pregnancy

then around 7 out of 10 cases of neural tube defects can be prevented.

In Grand Rapids, women who are planning a pregnancy can talk with:

  • Their primary care doctor
  • An OB/GYN
  • A midwife
  • Clinics associated with Corewell Health, Trinity Health Grand Rapids, Metro Health, or Mercy Health

about the right dose of folic acid for their situation.

2. Genetics and Family History

While the exact genetic causes are not always clear:

  • A woman is at higher risk of having a baby with an NTD if:
    • She has already had a baby with an NTD.
    • A close relative has had a baby with an NTD.

In some families, specific genetic mutations can prevent the baby from using folate properly, even when folate levels are normal. In these rare cases:

  • The baby may inherit faulty copies of a gene from both parents.
  • The neural tube defect can occur even if the mother takes folic acid correctly.

Because of this, women in Grand Rapids with a personal or family history of NTDs should consider:

  • Meeting with a genetic counselor (available through major hospital systems in Grand Rapids)
  • Discussing higher-dose folic acid or other preventive strategies with their doctor

3. Certain Medications

Some epilepsy (anti-seizure) medications can increase the risk of NTDs. If you take medication for seizures or other chronic conditions and are planning to become pregnant:

  • Do not stop your medication on your own.
  • Talk with a neurologist or OB/GYN in Grand Rapids about:
    • Safer medication options
    • Extra folate supplementation
    • Closer monitoring during pregnancy

4. Nutrition and Local Considerations in Michigan

In Michigan, including Grand Rapids:

  • Long, cold winters can limit access to fresh produce and may affect overall nutrition.
  • People may spend more time indoors, which can influence vitamin D levels and general health.

While these factors are not direct causes of NTDs, good overall nutrition before and during pregnancy supports healthy fetal development. Local resources such as the Kent County Health Department and Grand Rapids Public Health programs can help connect families to:

  • Prenatal vitamins
  • Nutrition counseling
  • WIC (Women, Infants & Children) services

Types of Neural Tube Defects

Spina Bifida

In spina bifida, the bones of the spine (vertebrae) do not close completely. As a result:

  • The spinal cord and nerves may protrude through a gap in the backbone.
  • This can affect the nerves that control the legs, bladder, and bowel.
  • Spina bifida can occur anywhere along the spine, but is most common in the lower back.

Many babies with spina bifida also develop hydrocephalus:

  • A build-up of cerebrospinal fluid inside the brain
  • Sometimes called “water on the brain”

Spina bifida ranges from mild to severe and is generally grouped into:

Spina Bifida Occulta (Mild)

  • The vertebrae have not fully closed.
  • The spinal cord remains inside the body and is usually unharmed.
  • There may be no visible lump or only subtle signs (such as a small dimple, patch of hair, or discoloration on the back).
  • Often diagnosed later in life, sometimes by accident during imaging for another reason.

Meningocele (Moderate)

  • The meninges (the membranes covering the spinal cord) bulge out through the gap in the spine.
  • The spinal cord itself often remains in place.
  • A visible sac or lump is present on the baby’s back.

Myelomeningocele (Severe)

  • The meninges, spinal cord, and blood vessels protrude through the spinal opening.
  • This is the most severe and most common form of spina bifida.
  • It often leads to:
    • Weakness or paralysis of the legs
    • Bladder and bowel problems
    • Risk of infection if the exposed tissues are not quickly protected

Treatment of Spina Bifida

Spina bifida is not curable, but treatment can improve quality of life.

  • Surgery is usually performed soon after birth to:
    • Close the opening in the spine
    • Protect the spinal cord and nerves
  • If the baby has hydrocephalus, a shunt (a thin tube) may be placed in the brain to:
    • Drain excess fluid
    • Relieve pressure

Children in Grand Rapids with spina bifida often receive ongoing care from:

  • Pediatric neurosurgeons
  • Orthopedic specialists
  • Urologists
  • Physical and occupational therapists

These services are available through major children’s and specialty hospitals in the Grand Rapids area.

Anencephaly

Anencephaly occurs when the neural tube fails to close at the head end. As a result:

  • Parts of the upper brain, meninges, top of the skull (calvarium), and scalp may be partially or completely missing.

Key points:

  • Anencephaly occurs about twice as often in females as in males.
  • About 1 in 10 affected babies is one of a pair of twins.
  • Some babies with anencephaly also have other birth defects, such as:
    • Congenital heart disease
    • Cleft palate

A baby with anencephaly cannot survive:

  • Most are stillborn.
  • Those born alive usually die within hours to a few days.

In Grand Rapids, families who receive this diagnosis may be referred to:

  • Maternal-fetal medicine specialists
  • Palliative care teams
  • Perinatal bereavement and counseling services

for emotional support, planning, and care during and after pregnancy.

Encephalocele

Encephalocele is a rare type of neural tube defect in which:

  • The meninges and brain tissue bulge out through a gap in the skull.
  • The protruding sac may be located at the back, top, or front of the head.

In more severe cases:

  • The bulging brain tissue, covered by meninges, can be larger than the baby’s head.
  • If the membrane breaks, the brain tissue is exposed and infection can occur.

Other conditions that may occur with encephalocele include:

  • Cleft lip or cleft palate
  • Extra fingers or toes (polydactyly)
  • Abnormalities of the sex organs
  • Hydrocephalus (fluid build-up in the brain)

Treatment of Encephalocele

Treatment depends on:

  • The size and location of the encephalocele
  • The amount of brain tissue involved

Options may include:

  • Surgery to place the brain tissue back inside the skull and close the opening
    (if there is not too much brain tissue outside)
  • Shunt placement to treat hydrocephalus, if present

Children with encephalocele may experience:

  • Intellectual disability
  • Muscle control problems (spasticity)
  • Seizures (convulsions)

Ongoing care may involve:

  • Physiotherapy (physical therapy)
  • Occupational therapy
  • Anticonvulsant medications to control seizures
  • Support from developmental pediatricians and neurologists

These services are available through pediatric specialty programs in the Grand Rapids healthcare systems.

Prevention and Planning a Healthy Pregnancy in Grand Rapids

Folate Supplementation

For most women:

  • Taking folic acid before pregnancy and during early pregnancy is the single most effective step to reduce the risk of neural tube defects.

General recommendations (always confirm with your doctor):

  • Start folic acid at least one month before conception.
  • Continue through at least the first 12 weeks of pregnancy.
  • Women with a personal or family history of NTDs, or those on certain medications, may need higher doses.

Local Resources in Grand Rapids, MI

If you live in Grand Rapids or the surrounding West Michigan area, you can seek help from:

  • Your GP / primary care provider
  • OB/GYN or midwife
  • Pediatrician
  • Maternal-fetal medicine specialist
  • Genetic counseling services at:
    • Corewell Health (Spectrum Health)
    • Trinity Health Grand Rapids
    • Metro Health – University of Michigan Health
    • Mercy Health

Public health resources include:

  • Kent County Health Department – prenatal programs, WIC, nutrition support, and referrals
  • Grand Rapids Public Health and community clinics – education on folic acid, family planning, and pregnancy care

These local services can:

  • Help you choose the right prenatal vitamin
  • Review your medications
  • Assess your family history
  • Arrange appropriate screening tests during pregnancy

Key Points About Central Nervous System Birth Defects

  • Neural tube defects (spina bifida, anencephaly, encephalocele) occur when the neural tube does not close properly in early pregnancy.
  • NTDs result from a mix of genetic and environmental factors, including folate deficiency and certain medications.
  • Taking folic acid before conception and during the first weeks of pregnancy can prevent about 70% of NTDs.
  • In some rare genetic conditions, the baby cannot use folate properly; in these cases, folic acid will not prevent the defect.
  • Spina bifida is incurable, but surgery, shunts, therapy, and ongoing care can greatly improve quality of life.
  • Anencephaly is fatal, and care focuses on supporting the family.
  • Encephalocele treatment often involves surgery, and many children need long-term rehabilitation and medical support.
  • In Grand Rapids, Michigan, families can access high-quality prenatal care, genetic counseling, and pediatric specialty services through local health systems and public health programs.

If you are in the Grand Rapids area and are planning a pregnancy or have concerns about neural tube defects, speak with your healthcare provider or contact the Kent County Health Department for guidance, folic acid information, and referrals to local specialists.