Spina Bifida what you need to know
Understanding what Spina Bifida means and what you can do to try and protect your baby
If you’re pregnant it’s likely you’ll have heard the term Spina Bifida discussed alongside folic acid, but what is it, how can you prevent it, and what does it mean for your baby if they are diagnosed?
What is Spina Bifida?
Spina bifida literally means ‘split spine’. It’s a birth defect where the neural tube in the spine doesn’t close correctly and the vertebrae don’t close in complete rings around a section of the spine, meaning a gap is left between the vertebrae. The result is that the protective membranes around the spinal cord, and even the spinal cord itself, can be pushed outside of the spinal column, and the body.
How is Spina Bifida caused and how can I prevent it?
The cause of Spina Bifida is unfortunately still unknown, though research is ongoing.
However, there are several things that can increase the risk of your baby developing Spina Bifida, the most significant of which is lack of folic acid. The central nervous system and spine develops very early on in your baby’s development, between the 14th and 23rd day after conception, so it’s important to be taking folic acid as soon as you start trying to conceive.
Other things which increase the risk are a family history of neural tube defects, obesity in the mother, diabetes in the mother (not gestational) and taking certain medication during pregnancy, in particular valproate and carbamazepine which are used to treat epilepsy and bipolar disorder. If you are taking these medicines or have a family history of neural tube defects then discuss getting pregnant with your doctor ahead of trying to conceive so that they can help you reduce the risk.
How serious is Spina Bifida?
There are three main types of spina bifida; Myelomeningocele, Meningocele and Spina bifida occulta. Myelomeningocele and Meningocele are both described as Spina Bifida Cystica (cyst-like) with Myelomeningocele being the more serious type, while occulta is latin for ‘secret’, meaning Spina Bifida Occulta is the hidden form.
Myelomeningocele is one of the most serious types, where the spinal cord and protective membranes around it push out of the opening in the spinal arches and create a sac in the baby’s back. It is associated with significant damage to the spinal cord and leaves the nervous system vulnerable to life threatening infections.
Meningocele is less serious, though not benign. Only the protective membranes are pushed outside the opening, while the spinal cord remains inside the spinal arches. The spinal cord and nervous system are not normally damaged, though there may be associated bladder and bowel problems.
Spina bifida occulta is the most common and least serious type. The opening in the spinal arches is small and covered in skin, so the spinal cord and protective membranes can’t push out and there is no obvious bulge in the back. As it doesn’t usually cause any symptoms most people are unaware they have it, though it’s estimated that 5-10% of the population have spina bifida occulta. In around 1 in 1,000 people it can cause bladder/bowel problems and reduced sensation in the legs, which are both treatable.
If my baby has Spina Bifida, what treatment is available?
If your baby has Spina Bifida it’s likely this will be identified at your 20 week anomaly scan.
You will have a follow up appointment with a specialist who will assess the quality of life that your baby will have. If the spina bifida is severe and the specialist feels your baby’s quality of life will be poor then you may be offered a termination.
If you choose to carry on with the pregnancy your baby will have surgery shortly after birth to repair the gap. After surgery your doctor will advise on an ongoing treatment plant which may include having a shunt fitted to drain excess fluid from the brain and physio.
It can be a challenging condition to live with, but many adults with spina bifida are able to lead independent and fulfilling lives.
For more advice and support on Spina Bifida visit the Shine charity website.