Oh, how wonderful it is to think of your little one in your belly! But sometimes, our children come into this world with unexpected health problems. Today, we are going to talk about a complex birth defect that occurs during the development of the spinal cord, or spinal cord, while the baby is still in the womb. This is called myelomeningocele. You may have also heard of it as ``Open Spina Bifida''. This is actually a condition in which the baby's spinal cord, or spinal canal, does not close properly.
What exactly is a myelomeningocele?
Simply put, myelomeningocele is a birth defect in which your baby's spine and spinal canal do not close completely before birth, in the womb. This is a type of neural tube defect (NTD). You may have a hard time pronouncing this name, right? It's pronounced like 'my-e-lo-men-in-go-ceil'.
Myelomeningocele occurs within the first four weeks of conception. This is when a baby's neural tube fails to close properly, causing a fluid-filled sac to protrude from the back of the baby's spine. Specifically, the sac may contain:
- Part of their spinal cord
- Meninges - tissues covering their spinal cord
- Nerves
- Cerebrospinal fluid (CSF) is an important fluid found in the brain and spinal cord.
Myelomeningocele can occur anywhere along a baby's spine, but it is most often seen in the lower back (lumbar and sacral areas) , that is, in the waist area.
The sad part is that the spinal cord and nerves inside the sac are damaged. This usually results in weakness or loss of sensation in the body parts below the sac . In some cases, the sac can rupture. This can happen due to normal movements of the baby while it is in the womb, or it can happen at birth.
Myelomeningocele is the most severe form of spina bifida, and can cause moderate to severe disabilities. For example, muscle weakness, loss of bladder or bowel control, and/or paralysis . However, babies with this condition lower down the spine usually have fewer symptoms than babies with this condition higher up the spine.
What is a neural tube defect?
Neural Tube Defects (NTDs) are birth defects (congenital conditions) of the brain, spine, or spinal cord. They often occur within the first month of pregnancy – sometimes before you even know you are pregnant. The two main types of neural tube defects are spina bifida and anencephaly.
This is what normally happens: During the first month of pregnancy, the two sides of the fetus's spinal cord fuse together to form a protective covering for the spinal cord, spinal nerves, and meninges (the tissue that covers the spinal cord). At this point, the developing brain and spinal cord of the fetus are called the neural tube.
So, if there is any error or problem in the formation of this neural tube, it is called a neural tube defect.
What is the difference between Spina Bifida and Myelomeningocele?
`Spina Bifida` refers to any birth defect in which the neural tube surrounding the spine does not close completely.
Spina Bifida can occur anywhere along a baby's spine, as mentioned earlier, if the neural tube does not close completely in utero. When this happens, the spinal cord, which protects the spinal cord, does not close properly. This can cause damage to the baby's spinal cord and nerves.
Myelomeningocele is a type of spina bifida – and the most severe. It is a sac filled with fluid that protrudes from the baby's back, containing part of the spinal cord and nerves. The other types of spina bifida are meningocele and spina bifida occulta.
What is the difference between Meningocele and Myelomeningocele?
Myelomeningocele and meningocele are both types of spina bifida, but there is a slight difference.
Meningocele is a condition in which a fluid-filled sac protrudes from an opening in the baby's back, but the sac does not contain the baby's spinal cord . This usually causes little or no damage to the nerves.
But in myelomeningocele , there's both a part of the spinal cord and nerves inside that sac, and they're damaged . That's what makes it worse.
Who is affected by Myelomeningocele?
Myelomeningocele can affect any fetus. Although scientists are not sure what causes it, they have identified certain genetic, environmental, and nutritional factors that increase a baby's risk of developing the condition.
How common is this condition?
Myelomeningocele is the most common congenital condition (birth defect) of the central nervous system. For example, in the United States, the condition affects approximately 1,645 babies born each year. Children are also born with this condition in Sri Lanka.
What are the symptoms of Myelomeningocele?
A baby with myelomeningocele has a fluid-filled sac that runs down the spine from the middle of the back . Doctors can often detect the condition during pregnancy with an ultrasound scan.
A baby with myelomeningocele may also have other birth defects . About 8 out of 10 babies with this condition also have a condition called hydrocephalus, which is a buildup of fluid on the brain .
Other problems of the spinal cord or musculoskeletal system that may be associated with myelomeningocele include:
- Syringomyelia (a fluid-filled cyst inside the spinal cord)
- Hip dislocation
What are the causes of Myelomeningocele?
Doctors and scientists still don't know the exact cause of myelomeningocele, but they believe it's a complex condition caused by a combination of genetic, nutritional, and environmental factors .
In particular, low levels of folic acid in the mother's body before and during pregnancy have been shown to contribute to the occurrence of this type of birth defect. Folic acid (also known as folate) is essential for the development of the fetus's brain and spinal cord.
How is Myelomeningocele diagnosed before the baby is born?
Often (but not always) doctors can diagnose myelomeningocele in a fetus during pregnancy. They use these tests:
- Blood test: Your doctor will order a blood test between 16 and 18 weeks of pregnancy that measures a substance called alpha-fetoprotein (AFP). About 75% to 80% of pregnant women carrying a baby with spina bifida have higher than normal levels of this AFP. If your level is also high, your doctor will order other tests, such as an ultrasound scan, to further examine the baby.
- Fetal prenatal ultrasound: An ultrasound scan during pregnancy is the most accurate way to diagnose myelomeningocele. Doctors usually recommend ultrasound scans in the first trimester (weeks 11-14) and the second trimester (weeks 18-22). The second trimester scan can most accurately diagnose the condition.
- Amniocentesis: If your ultrasound scan confirms that you have myelomeningocele, your doctor may recommend an amniocentesis. This is done to check for rare genetic conditions that are associated with myelomeningocele. This involves the doctor using a needle to take a sample of fluid from the amniotic sac surrounding the fetus. There are some risks with this test, so it's important to discuss this with your doctor.
If not detected during pregnancy, myelomeningocele is diagnosed after the baby is born using imaging tests such as an MRI (Magnetic Resonance Imaging) scan or a CT (Computed Tomography) scan.
What are the treatments for Myelomeningocele?
The usual treatment for myelomeningocele is surgery to close the opening in the baby's spinal cord .
Doctors can perform this surgery either before the baby is born (fetal surgery) or soon after birth (postnatal surgery) .
Because babies with myelomeningocele often have hydrocephalus (fluid buildup on the brain), a ventriculoperitoneal (VP) shunt may also be needed to remove the extra fluid from the baby's brain.
Many children will need lifelong treatment to manage the problems caused by damage to their spinal cord and nerves. Common treatments include antibiotics to prevent infections such as meningitis (brain infections) or urinary tract infections (UTIs) and physical therapy.
Fetal surgery for myelomeningocele
Fetal surgery is an option that can be chosen depending on the severity of the myelomeningocele and the health of the pregnant mother. This type of surgery is becoming increasingly common.
Although this surgery can prevent symptoms from getting worse, it cannot correct damage that has already been done to the spinal cord or nerves .
Important: There are complications associated with these fetal surgeries, such as an increased risk of preterm delivery and uterine dehiscence.
Postnatal surgery for myelomeningocele
If your baby did not have fetal surgery to repair the spina bifida, surgery should be performed as soon as possible after birth – ideally within the first 48 hours of birth – to reduce the risk of infection.
Which doctors should my child with myelomeningocele see?
Many children with myelomeningocele benefit from the support of a multidisciplinary team to coordinate their care and management. Specialists who may be involved in your child's care include:
- Neurologist
- Neurosurgeon
- Fetal surgeon
- Urologist
- Orthopedist
- Dermatologist
- Physical therapist
What are the risk factors for myelomeningocele?
Unfortunately, birth defects like myelomeningocele cannot be completely prevented – the risk can only be reduced . Most of the time, the condition occurs sporadically. But scientists have identified several risk factors associated with the condition. They are:
- Folate (folic acid) deficiency: Folate, the natural form of vitamin B9, is essential for healthy fetal development. Folate deficiency increases the risk of spina bifida and other neural tube defects (NTDs). If you are pregnant or planning to become pregnant, it is important to take prenatal vitamins to ensure you are getting the folate (folic acid) and other nutrients you need for a healthy pregnancy.
- Family history of neural tube defects: People who have had one child with a neural tube defect have about a 3% increased risk of having a second child with the defect. Also, women who have had a neural tube defect (NTD) are more likely to have a child with myelomeningocele than those who do not have the condition. However, most babies with myelomeningocele are born to parents who have no family history of the condition.
- Anti-seizure medications: Some anti-seizure medications have been found to be associated with an increased risk of neural tube defects when taken during pregnancy.
- Diabetes: Pregnant women with poorly controlled diabetes have an increased risk of having a baby with myelomeningocele.
- Obesity: Women who are obese before pregnancy have an increased risk of having a baby with a neural tube defect, including myelomeningocele.
- Increased body temperature: Increased body temperature (hyperthermia) during the early weeks of pregnancy, whether due to a persistent fever or from using a sauna or hot tub, has been found to slightly increase the risk of myelomeningocele.
Remember, having a baby with myelomeningocele is not your fault. Everyone of childbearing age is at risk of having a pregnancy affected by a birth defect.
What is the prognosis of myelomeningocele?
No two people with myelomeningocele are affected the same way. The prognosis for this condition depends on several factors. These include:
- The original condition of their spinal cord and nerves.
- How high or low the opening is in the spine.
- Is that bag open or closed?
- Whether they had the surgery before or after birth.
The mortality rate for people with spina bifida is about 1% per year between the ages of 5 and 30. The higher up the spinal cord the lesion is, the greater the risk of complications and death.
The side effects and complications of myelomeningocele can significantly impact quality of life. People with this condition are more likely to experience depression, anxiety, and risk-taking behaviors .
What are the complications of myelomeningocele?
Complications associated with myelomeningocele are:
- Paralysis and/or loss of sensation in the body parts below the area of the fluid-filled sac (lesion).
- Decreased mobility due to muscle weakness.
- Bone problems associated with paralysis , for example scoliosis (curvature of the spine), contractures, and hip dislocation.
- Loss of bladder and/or bowel control.
- Frequent occurrence of urinary tract infections (UTIs).
- Meningitis (brain infection).
- Latex allergy.
- Learning differences or developmental delays (cognitive impairments).
- Epilepsy `(Seizures)`.
How do I care for my baby with myelomeningocele?
The most important thing to remember is that no two people with myelomeningocele are affected the same way. There is no way to know for sure how your baby will be affected. The best thing you can do is talk to a doctor who specializes in researching and treating spina bifida and myelomeningocele.
As your child grows, he may benefit from the support of a team of specialists to care for his needs.
When should I talk to my child's doctor about myelomeningocele?
If your child is born with myelomeningocele, he or she will need to see his or her doctor – or team of doctors – regularly throughout his or her life.
In particular, it is very important to talk to your child's doctor for these reasons:
- If your child is too late to start walking or too late to start crawling.
- If your child has symptoms of hydrocephalus, for example, a bulging soft spot on the forehead, irritability, excessive sleepiness, and difficulty feeding.
- If your child has symptoms of meningitis, they may have fever, stiff neck, irritability, and high-pitched crying.
What questions should I ask my doctor about myelomeningocele?
If your doctor suspects a myelomeningocele, it may be helpful to ask you these questions:
- What can I do to stay healthy during the rest of my pregnancy?
- Can you recommend doctors and specialists who specialize in Spina Bifida and Myelomeningocele?
- What are the treatment options for myelomeningocele?
- What are the risks and benefits of fetal repair surgery and postnatal repair surgery?
- Am I at risk of having another child with myelomeningocele?
- Do you have information about support groups for people with myelomeningocele and parents of such children?
Finding out that your baby has a serious medical condition can be overwhelming. But remember that you are not alone – there are many resources to help you and your family. It is important to talk to a doctor who is knowledgeable about myelomeningocele to learn more about how it affects your baby and how to prepare.
A Take-Home Message from Us
Myelomeningocele is a very complex birth defect. But with the right medical care, support, and love, these children can live a good life . It is important to recognize this condition in the fetus and seek prompt treatment. Taking steps like getting enough folic acid can also reduce the risk of this condition. If you have any further questions about this, don't hesitate to talk to your doctor.
` Myelomeningocele, spina bifida, birth defects, neural tube defects, spine, baby health, pregnancy
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