October is National Spina Bifida Awareness month in the United States. According to the CDC website around 1500 babies are born each year with the birth defect. Here in the UK the statistics are around one in every thousand babies are born with the defect. Although we are warned about the risks of spina bifida before and during pregnancy, we might not know that much about the condition– I know I don’t. Even though I had a family member who was born with the condition I never knew too much about it until I began writing this piece. Today I am going to share what I’ve found about Spina Bifida, how to prevent it, its treatment, and how we can raise awareness.
What Is Spina Bifida?
Spina Bifida is a birth defect that affects the spine and spinal cord. During development the neural tube, which later becomes the spine and brain closes at around 4 weeks gestation. In spina bifida patients the neural tube remains open leading to problems with the spine and vertebrae. The exact cause of spina bifida is unknown, however a lack of folic acid before and during pregnancy is a high risk factor. Like so many conditions, Spina Bifida is considered invisible. We don’t see the patients’ scars, pain, discomfort, or the emotional toll of living with Spina Bifida.
Types of Spina Bifida
According to the UK’s National Health Service website there are several types of spina bifida ranging from very severe to so mild that the person may not know they have it.
The most common type of Spina Bifida is Occulta. An Occulta patient may have one or more vertebrae that haven’t formed correctly leaving a small gap in the spine so small that a person may not be aware of. They don’t experience any symptoms and are able to lead a normal life.
The most severe type of spina bifida is called myelomeningocele. In these cases the spinal cord and several vertebrae remain open’ leading to the spinal cord and its protective membrane protruding out of the back in a small sac. The opening can closed by surgery however the nervous system may still be affected.
Although not as severe as myelomeningocele, meningocele can still be very serious. With this type of spina bifida a sac can still be present as the protective membrane is protruding, however the spinal cord has developed normally. Surgery can be carried out to repair the membrane sac without damaging the nerves.
Due to the potential damage of the nervous system in the more severe cases of Spina Bifida the symptoms can be:
Bladder and bowel problems.
Weakness or loss of sensation below the defect.
Inability to move the lower legs.
Orthopedic malformations such as clubfoot or problems with the hips or knees.
According to the Children’s Hospital Of Philadelphia’s site, the further up the spinal defect the more complications can be found in the patients.
Generally spina bifida will be diagnosed during pregnancy at the mid-pregnancy scan otherwise known as the anomaly scan. The sonographer will conduct a thorough, more detailed scan where the brain, heart, spine, and facial features will be examined in more detail.
Another way of diagnosis is through a blood test generally carried out in the second trimester. Blood is drawn and tested for the presence of Maternal Serum Alpha-Fetoprotein (MSAFP). If the results find high levels of Alpha-Fetoprotein (AFP) in the mother’s blood this may indicate the presence of a neural tube defect, however not all high levels of AFP indicates spina bifida.
Some cases may not be diagnosed until the child is born. If the child has either myelomeningocele or meningocele it will be obvious due to the visibility of a dark spot, hairy patch, or swelling in the lower back.
Surgery is the most common treatment for spina bifida. In some instances the surgery can be carried out during the pregnancy. At around 26 weeks an incision is made through the uterus and the defect is repaired.
According to the About Kids Health site, if surgery isn’t plausible at this point it will be carried out a few days after the baby is born. The sac cannot be left outside of the body for too long as that increases the risk of infection. A neurosurgeon will conduct the surgery where they will close the skin over the sac.
Treatments after surgery will vary from patient to patient, depending on the severity of their condition. Physiotherapy and occupational therapy could be part of the long term treatment process to help with patient cope with day to day life. Some patients may also require the aid of walking equipment such as canes, crutches, or a wheelchair.
Although considered to be a challenging condition to live with, many children who are born with Spina Bifida can lead a fulfilling life.
Although it is not known exactly what causes spina bifida, it is important that expectant mothers or those trying to conceive have access to the recommended daily amount of folic acid, whether than be through supplements or lots of folic acid enriched foods such as broccoli, asparagus, and more.
Raising awareness of Spina Bifida is important, especially when you look at the statistics of how many babies are born each year with one form or another. As part of Spina Bifida Awareness month we need to get a narrative going, raising the awareness of what the condition is and what the patients may experience. We can share the yellow ribbon on our social media feeds and talk to our friends about the impact of spina bifida.
Some of the sites I found whilst researching Spina Bifida were great resources an would be extremely useful for anyone who has Spina Bifida themselves or whether their child, niece or nephew, grandchild may have the condition and you want to know more.
My Child Without Limits – http://www.mychildwithoutlimits.org
Shine Charity – https://www.shinecharity.org.uk
Spina Bifida Association – https://sbinsights.org