Guidance

Spina bifida: information for parents

Updated 9 March 2020

1. Overview

This information will help you if your baby is suspected of having spina bifida following your 20-week scan (sometimes referred to as the mid-pregnancy scan).

It will help you and your health professionals to talk through the next stages of your and your baby’s care. This information should support, but not replace, discussions you have with health professionals.

Finding out there may be a problem with your baby’s development can be worrying. It is important to remember you are not alone.

We will refer you to a specialist team who will do their best to:

• provide more accurate information about your baby’s condition and treatment
• answer your questions
• help you plan the next steps

2. About spina bifida

Spina bifida is a condition that affects the spine and spinal cord.

In the early stages of pregnancy, the nervous system of the developing baby starts as a single structure called the neural plate. By day 28 of pregnancy the neural plate should fold over and close to form the neural tube.

Spina bifida is a neural tube defect (NTD) where part of the baby’s neural tube does not develop or close properly. This leads to the baby’s spinal cord (the big bundle of nerves running from the brain down the baby’s back) or vertebrae (the bones of the spine) not developing as they should.

The 2 types of spina bifida are:

• closed spina bifida (spina bifida occulta)
• open spina bifida (spina bifida aperta)

Left to right: a fully formed spine, a spine with closed spina bifida, a spine with open spina bifida with sac coming out (image from UZ Leuven, Leuven, Belgium)

3. Closed spina bifida

Closed spina bifida, or spina bifida occulta, is less serious than open spina bifida. The spinal bones alone have not formed properly, but the spinal cord is covered by skin.

Symptoms of closed spina bifida can include deep dimples or fatty lumps (lipomas) on the baby’s back where the condition is, which can affect the way the nerves work. However, many people with closed spina bifida may not have any other symptoms.

4. Open spina bifida

The spinal bones, spinal cord and nerve tissue along part of the spine do not form properly in people who have open spina bifida. This results in a sac coming out of the opening in the spine, leaving spinal tissue uncovered.

The brain and spinal cord are covered in spinal fluid (cerebrospinal fluid). In babies with spina bifida this fluid comes out through the sac in the baby’s spine. The sac may also contain some spinal cord and nerves which can become damaged. This can happen anywhere along the spinal cord, although it is most common in the lower back.

4.1 Causes

We do not fully understand why spina bifida happens. In most cases, spina bifida happens by chance during the baby’s early development. However, in rare cases, it can be part of a genetic condition that runs in families. You will be able to discuss your individual circumstances with a specialist team.

You might be offered a test, called an amniocentesis test, if the specialist team think the spina bifida could be part of a more complicated condition.

Spina bifida is found in about 6 babies out of every 10,000 (0.06%).

5. How we find spina bifida

We screen for spina bifida at the 20-week scan (between 18⁺⁰ to 20⁺⁶ weeks of pregnancy).

Closed spina bifida is difficult to detect before birth.

6. Follow-up tests and appointments

As the result of the scan suggests your baby has spina bifida, we are referring you to a team of experts in caring for pregnant mothers and their babies before they are born. They may be based at the hospital where you are currently receiving antenatal care, or in a different hospital. You will need a second scan to find out for sure if your baby has the condition. The specialist team will be able to confirm if your baby has spina bifida and what this might mean.

It may be useful to write down any questions you want to ask before you see the specialist team.

7. Treatment

The team of experts looking after you and your baby will involve specialists who will help care for your baby after birth. They will talk to you about the condition, possible complications, treatment and how you can prepare for the birth of your baby. Members of the team will talk to you about the condition and how you can prepare for the birth of the baby. They will also talk to you about how they would treat the baby after the birth. Possible treatment will depend on how serious the condition is and where the spina bifida is on the spine.

The team may also offer you an appointment with a paediatric neurosurgeon who specialises in performing surgery on babies and children with this condition. They will be able to explain the type of operation or other treatment the baby might need to close the spina bifida.

In some cases, open spina bifida can be closed while the baby is still in the womb. This is called fetal surgery. The team of experts looking after you will discuss with you if this surgery might be an option.

8. Longer term health

The long-term health of babies who have open spina bifida will depend on:

• the size and position of the spina bifida
• whether there is damage to the spinal cord and nerves and, if so, how much

It will also depend on whether the baby develops hydrocephalus, which is a build-up of fluid in the baby’s brain caused by open spina bifida. Many babies with spina bifida will either have or will develop, hydrocephalus.

Babies with open spina bifida often have problems controlling their bladder and bowels. In more serious cases, they may have problems walking or may be unable to walk. Spina bifida and hydrocephalus can cause some learning difficulties. Babies with closed spina bifida may need checks to see if their bladder is working properly and may need surgery in later life.

9. Next steps and choices

You can talk to the team caring for you during your pregnancy about your baby’s spina bifida and your options. These will include continuing with your pregnancy or ending your pregnancy. You might want to learn more about spina bifida. It can be helpful to speak to a support organisation with experience of helping parents in this situation.

If you decide to continue with your pregnancy, the specialist team will help you:

• plan your care and the birth of your baby
• prepare to take your baby home

If you decide to end your pregnancy, you will be given information about what this involves and how you will be supported. You should be offered a choice of where and how to end your pregnancy and be given support that is individual to you and your family.

Only you know what the best decision for you and your family is. Whatever decision you make, your healthcare professionals will support you.

10. Future pregnancies

Future pregnancies are not likely to be affected by the condition. However, if you have had a baby with spina bifida, there is a small chance, up to 4% (4 out of 100), of having another baby with the condition.

If the baby’s spina bifida was part of a genetic condition, the chances of having another baby with spina bifida can be higher, up to 25% (25 out of 100). If this is the case, you may be referred to a genetic counsellor to discuss future pregnancies.

There is a possible link between spina bifida and low levels of folate (folic acid) in your blood. If planning future pregnancies, it is recommended that women who have had a previous pregnancy affected by spina bifida take a higher dose of folic acid (5 mg per day instead of the usual 0.4 mg per day) before getting pregnant and up until 12 weeks of pregnancy.

11. More information

Antenatal Results and Choices (ARC) is a national charity that supports people making decisions about screening and diagnosis and whether or not to continue a pregnancy:

NHS.UK has a complete guide to conditions, symptoms and treatments, including what to do and when to get help.

Shine is a national charity providing specialist advice about, and support for, spina bifida across England, Wales and Northern Ireland.

Information for parents who are offered a chorionic villus sampling (CVS) or amniocentesis diagnostic test.

Find out how Public Health England (PHE) and the NHS use and protect your screening information.

Find out how to opt out of screening.

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PHE created this leaflet on behalf of the NHS.