Spina bifida is the story of an unfinished symphony.

Imagine a journey that begins long before you take your first breath, a path of development where every step matters, even before you know you’re on it. 

Just a few weeks after conception, a blueprint for the entire body is being meticulously drawn. 

The flat sheet of cells that will become the neural tube starts to curve and fold in on itself. 

The folding intensifies, and the once-flat sheet transforms into a tube. This tube will eventually differentiate into two distinct regions. 

The upper part will become the brain. The lower part will form the spinal cord. It will carry signals, thoughts, and sensations throughout the body.

This embryonic structure is the neural tube.

What is spina bifida?

The condition called spina bifida is a type of defect of the neural tube. 

It is caused by the incomplete development of the spinal cord, the vertebrae that form the spinal column, or the overlying skin. These processes happen in the first few weeks of conception.

The condition is usually apparent at birth or earlier.

The three main types of spina bifida

Spina bifida occulta is the mildest type and is often ‘hidden’. Many times, spina bifida occulta is not discovered until late childhood or adulthood.

Although there is a small gap in the spine, there is no opening on the back. The spinal cord and the nerves are normal. 

The second type is Meningocele (ma-ninja-seal). This occurs when a fluid-filled sac sticks out of the baby’s back but does not contain any of the spinal cord or nerves. This is a mild form of spina bifida and may not result in any significant impairments or damage.

The most serious form is known as Myelomeningocele (my-ello-ma-ninja-seal). This is when part of the baby’s spinal cord and nerves protrude from an opening in the back.

This is treated with surgery to close the opening, prevent infection, and move things back into place. Unfortunately, nerve damage cannot be repaired.

How common is spina bifida?

The average worldwide incidence of spina bifida is 1 case per 1,000 births. However, that figure varies greatly by geographic region.

In Australia, there are about 150 babies born each year with spina bifida.

There are around 5,000 people already living with spina bifida in Australia.

The symptoms of spina bifida

The symptoms of spina bifida can vary depending on the type and severity of the condition. Some common symptoms and complications include:

  • * Physical Disabilities: People with spina bifida may experience problems with walking, bladder and bowel control, and muscle weakness.
  • * Hydrocephalus: Some individuals with spina bifida also develop hydrocephalus, a condition where excess fluid builds up in the brain. This may require surgical treatment to drain the excess fluid.
  • * Learning and Developmental Challenges: Children with spina bifida may face learning difficulties and developmental delays.

How is spina bifida treated?

While spina bifida is a lifelong condition, many individuals with this condition lead fulfilling lives with the right care and support. Treatment and management may include:

  • Surgery: Babies born with myelomeningocele often require surgery to close the opening in their spine. Additional surgeries may be needed as they grow.
  • Physical Therapy: Physical therapy can help improve strength, mobility, and overall physical function
  • Continence Management: Managing bladder and bowel function may require medication, catheterisation, or other strategies.
    Education and Support: Children with spina bifida may benefit from special education services and support groups for both the child and their family.

What causes spina bifida?

Spina bifida is a complex condition that is likely caused by many factors, both genetic and environmental. 

Neural tube defects (like spina bifida) occur in the first month of pregnancy.

Although it is still unclear what causes spina bifida, folate is thought to be significant.

How can I prevent my baby from having spina bifida?

A deficiency of folate is an established risk factor for developing neural tube defects. To reduce the risk of spina bifida, it’s important to get enough folate in your diet.

Folate is the naturally occurring form of vitamin B9 in food. One of the best sources of folate is green leafy vegetables such as spinach and lettuce. Other sources are avocadoes, asparagus, and Brussels sprouts.

Folic acid is the synthesised version of folate.

Many breakfast cereals, packaged foods, flour, and kinds of milk have folic acid added so getting enough should be easy. Take a supplement if you’re unsure. The recommended amount is 400 micrograms per day.

How is spina bifida diagnosed?

The diagnosis of Spina Bifida can be made from ultrasounds and blood screening tests between the 16th and 18th weeks of pregnancy. 

Once the diagnosis is made, families are often referred to the Spina Bifida Service at their local children’s hospital for information and counselling.

What famous people have spinal bifida?

Artist Frida Kahlo and musician John Mellencamp were both born with spina bifida.

The extraordinary Kahlo had not only spina bifida, but also polio, a serious spine injury, and neuropathic pain.

Mellencamp who was born in 1951, underwent pioneering surgery and survived. In the 1950s it was standard procedure for babies to wait for six months before operating on a baby with a neural tube defect. Given that so many died before then, a surgeon decided to operate straight away.

Mellencamp survived.

He only learned of his early infancy operations many years later.

October is Spina Bifida Awareness Month

This October is Spina bifida awareness month. It’s a complex condition that can have a wide range of effects on babies, parents, and families. With early intervention, medical care, and support, many people with spina bifida can lead fulfilling lives.

Links and resources

Spina bifida adult resource team (Hornsby) via Health Direct link

Spina bifida support group Central Coast

The Spina Bifida Association

The Sydney Children’s Hospitals Network fact sheet

Disclaimer: This article is general in nature and shouldn’t be considered as medical advice. For personalised medical advice, book an appointment with a GP at Narara Valley Medical.