Spina bifida is a condition which develops in early pregnancy. The spine forms with a gap along it, which causes damage to the spinal cord. Our brain sends and receives messages to the rest of the body through the spinal cord. Therefore, some types of spina bifida can have big effects on how the body functions.

Closed spina bifida

Closed spina bifida is where the gap in the spine is covered by skin. It isn’t usually visible on pregnancy scans and often there are no obvious symptoms. For this reason, many people may not know that they have it. Sometimes, symptoms may appear during growth spurts in childhood or in middle age.

Open spina bifida

Open spina bifida is where the gap in the spine is open and a cyst forms where the gap is. The cyst may contain spinal fluid, tissue and nerves, which are then exposed to fluid in the womb and become damaged. The severity of the condition depends on how big the cyst is and where it is located on the spine.

Open spina bifida can be detected at the 20-week pregnancy scan. The doctor will offer a second scan before they confirm the diagnosis.

Treatments

Usually, doctors will operate on a baby who has open spina bifida soon after they are born. They close up the opening in the spine. In some cases, parents have the option to have the operation while the baby is still in the womb, before the 26th week of pregnancy.

Babies may then have to have other surgeries for related conditions, such as hydrocephalus. Other symptoms will need careful management in order to prevent infections and further complications. Medical teams will also offer physical therapies to help with development and increase independence.

Effects

Open spina bifida can affect lots of different body functions. Each person is a unique case. However, most people experience the following effects to one degree or another:

• Mobility issues – Reduced movement, weakness or paralysis in the lower body. Some people are full-time wheelchair users, while others are able to walk but may choose to use a wheelchair for longer distances, when playing sport or as they get older.
• Reduced skin sensation – Lack of feeling in the lower body due to nerve damage increases the risk of skin problems like pressure ulcers and infected wounds.
• Bladder and bowel issues – Spina bifida often affects the nerves which control the bladder and bowels, meaning that people usually need to manage emptying their bladder manually.
• Orthopedic issues – These occur due to weakened muscles and can include scoliosis, clubfoot and shortened, tight muscles. Many people wear splints to help support their feet and ankles.

Closed spina bifida comes with a different set of challenges. These are sometimes obvious from birth, but more often they appear gradually in children or adults. They can include:

• Back pain
• Feet turning inwards
• Numbness in the legs or back
• Bladder or bowel issues
• Pain, tiredness, balance issues or weakness when walking

Living with spina bifida

Our SHASBAH community is proof that life with spina bifida can be wonderful, active and fulfilling. There are often additional challenges such as navigating medical appointments, the education system, accessing benefits and getting good social care. SHASBAH exists to help with these challenges and to provide a lively community of people with similar life experiences.

People with spina bifida can access higher education, enjoy their careers, have families, travel the world and do anything else they put their minds to!

Related conditions

There are a few additional health conditions that many people with spina bifida also have:

• Hydrocephalus – A condition caused by the build up of spinal fluid in the brain, causing an increase in pressure which damages the brain tissue. Hydrocephalus is usually treated by inserting a shunt to drain away excess fluid.
• Chiari II – The brainstem develops differently and is longer and lower than it normally would be.
• ADHD and autism – Differences in brain structure and development can result in neurodiversity.
• Sleep apnoea – A sleep disorder which can cause various symptoms, including tiredness and headaches.

Further information

• Shine charity
• NHS.UK