How Long Can You Live With Spina Bifida?

Medically Reviewed on 12/16/2022
Spina Bifida
Children with mild spina bifida can live long and active lives without treatment.

Many children with spina bifida live into adulthood with the proper treatment and care. The estimated mean age for a person with spina bifida is 40 years.

Spina bifida is a permanent, incurable condition. Although living with it is often difficult, many individuals can lead independent and fulfilling lives.

The severity of spina bifida ranges from mild to severe. Life expectancy is determined by the level of disability, as well as the severity of the condition and any associated medical conditions.

What is spina bifida?

Spina bifida is a neural tube defect; it is a birth disorder that occurs when there are issues with the spine, spinal cord, and surrounding nerves. It can cause a part of the spinal cord and surrounding tissues to develop outside the body. This issue can occur anywhere along the spine. In the United States, 7 out of every 10,000 live newborns are affected with neural tube abnormalities.

Spina bifida is categorized into three types depending on the severity of the condition:

  1. Spina bifida occulta
    • A mild form of the condition.
    • The spinal cord and associated tissues are retained within the infant. However, the lower spine does not develop properly.
    • Over the location of the defect, a hairy patch, dimple, or birthmark could develop.
    • In some instances, the child may not have any obvious signs, and the condition is accidentally identified in imaging studies that are done for other unrelated conditions.
  2. Meningocele
    • A rare and moderate case of spina bifida.
    • A fluid-filled sac, containing the spinal fluid, with no neural tissues projects from the spinal column. It surrounds the spinal cord.
    • However, the spinal cord and nerves are not contained within the sac.
  3. Myelomeningocele
    • The most severe form of spina bifida.
    • The membranes and spinal nerves push through this hole, producing a sac on the newborn's back and, generally, exposing tissues and nerves.
    • A newborn with this condition will often have weakness and lack of sensation below the abnormality.
    • Exposes the newborn to potentially fatal infections.
    • The baby's bowel and bladder function could be impaired.
    • Most will have hydrocephalus. It causes a buildup of fluid inside the skull, pressing against the interior of the head and forcing the skull bones to grow bigger than usual.

What are the causes of spina bifida?

There is no known or clear cause of spina bifida, but doctors believe it results due to a combination of genetic and environmental factors. A family history of neural tube defects and folate (vitamin B9) deficiency can cause spina bifida in newborns.

According to research, a person who has given birth to a child with spina bifida is more likely to have another baby with the same condition. Furthermore, pregnant people who are not in excellent health, such as those with chronic conditions (diabetes) or obesity, are more likely to give birth to kids with birth abnormalities.

Risk factors of spina bifida

Data suggests that genetic and environmental factors, such as food, can contribute to the development of spina bifida.

The following factors in pregnant individuals make their children more likely to have spina bifida than others:

  • Have a dietary folate deficiency
  • Have a previous history of a child with spina bifida (if the child’s father has a family history of spina bifida, the child is more likely to have the disorder)
  • Taking anti-seizure medication
  • Obesity

What are the symptoms of spina bifida?

The symptoms depend on the severity of the condition. The mild form of spina bifida causes no issues in most children and may not exhibit any symptoms. Children with the most severe form of spina bifida often have substantial spine and brain disorders.

  • They could be unable to move their legs, feet, or arms because they lack sensation in those areas
  • Bladder or bowel issues, such as leaking urine or difficulty passing feces
  • Hydrocephalus (fluid accumulation in the brain), which even with treatment can result in seizures, learning difficulties, or eyesight impairments
  • Scoliosis (curvature defect in the spine)


Conception: The Amazing Journey from Egg to Embryo See Slideshow

How is spina bifida diagnosed?

A person can undergo a blood test (quad screen) and an ultrasound of the developing baby when pregnant. These examinations look for indicators of spina bifida and other issues. If the test findings indicate a birth defect, amniocentesis (collection and study of amniotic fluid) could be recommended to diagnose spina bifida.

If spina bifida is suspected, the doctor may order an X-ray, an MRI, or a CT scan to determine the severity of the problem.

A doctor can typically identify if a newborn has spina bifida by looking at the infant's back after birth.

How is spina bifida treated?

Children with mild spina bifida can live long and active lives without treatment. Some instances of meningocele may not require treatment. However, because of the difficulties that myelomeningocele may cause, the treatment should be ongoing. Surgery is a possibility in the most severe cases of spina bifida. Such operation can be performed before birth (prenatal repair of myelomeningocele).

  • Specific symptoms could be treated separately. A child with hydrocephalus may require surgery to remove excess fluid from the brain, but a child with scoliosis may benefit from a back brace or other therapeutic measures to lessen spinal curvature.
  • Children with bladder difficulties may get a catheter to help avoid kidney damage, whereas those with bowel problems should receive stool management assistance when they start to eat solid food.
  • Because certain symptoms may not appear until the child is older, further treatments and surgical procedures could be considered later.
  • Some children with spina bifida may require long-term therapy from physical and occupational therapists to learn how to conduct typical tasks. Regular workouts throughout therapy can assist the person stay active throughout their life. However, therapy should begin as soon as the baby is delivered.
  • Children and adults with spina bifida may struggle with self-esteem issues, especially if the symptoms of their disease are visibly obvious. The family must help them continuously, throughout their life to develop their self-esteem.
Medically Reviewed on 12/16/2022
Image Source: iStock image

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