What to know about meningocele

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Meningocele is the name doctors give to a sac of fluid that sticks out through an opening in a child’s back. The sac is sometimes on other areas of the spine, such as the neck or head.

With this type of spina bifida, the spinal cord is not inside the fluid-filled sac. For many children, this condition may lead to disabilities, but damage to nerves is usually minimal or not a factor. Meningocele can be milder and occurs less frequently than some other types of spina bifida.

Each year over 1,400 infants are born with spina bifida.

According to the Centers for Disease Control (CDC), infants born to Hispanic mothers make up the largest majority of those born with abnormalities of the spine compared with non-Hispanic Black and white infants. The following is a breakdown of spina bifida diagnoses in newborns by race:

• Hispanic babies: 3.8 out of every 10,000 live births.
• Non-Hispanic Black babies: 2.73 out of every 10,000 live births.
• Non-Hispanic white babies: 3.09 out of every 10,000 live births.

Meningocele can lead to complications and may require surgical repair. A diagnosis can occur during pregnancy or after birth, and in rare cases, in adulthood. The following tests allow for diagnosis during pregnancy:

• Alpha-fetoprotein (AFT) test: During this test, doctors draw blood during the second trimester of pregnancy. The babies of 75–80% of pregnant people with a higher AFT blood level receive a diagnosis of spina bifida.
• Ultrasound of the fetus: During an ultrasound scan, an ultrasound picture of the fetus in the womb can show spinal abnormalities.
• Amniocentesis: A needle collection of a small sample of amniotic fluid can provide information about protein levels.

Other diagnostic tests done after the infant is born to detect meningocele are an MRI, X-ray, or CT scan.

There is no one factor in particular that causes meningocele. Research is ongoing to provide further insight into potential causes. But there are genetic and social health determinants that contribute to a spina bifida diagnosis.

Several factors can increase the likelihood of an infant being born with meningocele, including:

• history of certain medical conditions before and during pregnancy, such as high blood sugar or obesity
• certain medications (such as anti-seizure drugs)
• exposure to radiation
• stress
• history of birthing another child with meningocele
• lower socioeconomic status
• lack of folic acid consumption before conceiving and while pregnant
• diagnosis of the birthing parent with rubella, toxoplasmosis, cytomegalovirus
• ethnicity of the birthing parent

Before having a child, it may be helpful for people to learn more about their family’s genetic background and the genetic history of their partner.

Talking with an obstetric provider (OBGYN or midwife) is a good starting point to find out what options are available. Some of the typical offerings that may be available include prenatal blood tests and genetic counseling.

Once a fetus has a meningocele diagnosis, surgical repair will most likely be the next step. A surgeon can perform the repair prenatally or after the infant is born.

A surgeon who specializes in fetal surgery will perform the surgery. Surgery in-utero is a consideration if the potential benefits outweigh the risks.

If the birthing parent didn’t receive prenatal care and their child is born with meningocele, a doctor will perform an immediate assessment and evaluation.

If the plan is to repair the meningocele after the infant is born, the birth will happen at a hospital specializing in spina bifida repair. Birth may occur either vaginally or by cesarean.

A 2018 systematic review highlights that a birthing parent of a fetus who did not undergo prenatal repair of meningocele may be a candidate for either a vaginal or cesarean delivery. The research also notes that giving birth by cesarean did not necessarily lead to better health outcomes for the infant.

After the birth, doctors will perform the surgical repair under general anesthesia to remove the meningocele within 72 hours.

After the surgery is complete, the newborn will receive care in the neonatal intensive care unit by neonatal nurses, neonatologists, and other specially trained medical professionals.

It is important to note that a diagnosis of meningocele can result in varying degrees of health issues.

Even with surgical repair, some complications can persist. Some of the more common issues include problems with bowel and bladder control and function.

Depending on the area of the spinal cord that the meningocele affects, paralysis or limitations in the ability to move limbs can occur. Due to surgical intervention, infection and bleeding are also potential risks.

Although it may not be a factor with meningocele, some children with a spina bifida diagnosis may have learning difficulties or have some delay in meeting developmental milestones.

When caring for infants with meningocele, it is important to avoid using latex gloves, since infants with spina bifida often have allergic reactions to latex. Some other items that may contain latex include some bottle nipples, toys, diaper changing pads, mattress covers, and pacifiers.

After surgery, the infant will remain in the hospital to recover for approximately 2 weeks.

Once the infant is home, there will be an ongoing need for follow-up visits with specialists such as a pediatric neurologist, neurosurgeon, urologist, and physical therapists, among other professionals.

Meningocele doesn’t have one specific cause. But research shows folic acid helps decrease the chances of a fetus developing spina bifida.

The American College of Obstetricians and Gynecologists recommends that people of childbearing age take 4 milligrams (mg) of folic acid each day.

Additionally, certain folate-rich foods can help with maintaining adequate folate blood levels. In the United States, manufacturers enrich many foods with folic acid, such as pasta, bread, and foods made with flour, such as tortillas.

Some fruits and vegetables are naturally higher in folate, such as beans, broccoli, oranges, and spinach. Food is a good source of folate, but pregnant people should still take a folic acid supplement.

Diagnosis of meningocele, as with many conditions, can be worrisome. Living with spina bifida can present some obstacles, which is why it is helpful to have a supportive network.

But due to modern medical advances, many people with meningocele can still experience a good quality of life.

It is important that people with meningocele continue to follow up with their healthcare professional and other specialists to ensure that they remain as well as possible.