Imagine a life of unbearable pain where you can’t eat, sleep, walk or even sit. This is the uncomfortable reality for many children in developing countries who suffer from the birth defect known as spina bifida. In the U.S. alone, around 1,500 babies are born every year with spina bifida (Source: Children's Hospital of Philadelphia (CHOP)). In many African countries, among the 1,000 babies that are born, it is highly likely that 140 will die within 5 years and at least 110 babies could be saved by using basic, low-cost practices (Source: Miles, 2006). Although there is no actual cure for the disorder, access to medical facilities and resources is beneficial in detecting spina bifida before or after mothers give birth so that medical professionals can diagnosis and provide treatment immediately.
Without the necessary resources and funds, many children with spina bifida in developing countries do not have that benefit. Therefore, most of the children’s parents often turn to their communities to fund and help them find a treatment for spina bifida. An article titled “Children with spina bifida and hydrocephalus in Africa: Can medical, family and community resources improve the life chances?” by M. Miles, mentions that apart from further development and the spread of medical and surgical interventions, there needs to be a greater focus on the enlistment and the facilitation of community and family resources and information. Additionally, the parents in these developing countries are slowly making an impact in the public by bringing professional awareness of their difficulties in raising children who have survived spina bifida with or without surgery.
The Little Boy That Could
Depending on the severity of spina bifida, the effects of it can vary based upon how bad the condition is or how much damage is caused to the nerves of the spinal cord. In Algeria, a little boy named Mounib suffered greatly from a very severe form of spina bifida for 2 years. Mounib’s mother shared with the public that the pain was so severe that the little boy could not eat, sleep, walk and had to live with this pain every day (Source: Mayo Clinic, 2008). Moreover, Mounib spent the first 2 years of his life tilted forward on his stomach. Later Mounib’s sac broke and he fell into a coma; the doctors tried operating on him, but were unsuccessful. Amazingly, due to the donations from the community, Mounib was transferred over to Mayo Clinic where neurosurgeons placed Mounib on a customized treatment plan that was successful. After the treatment, Mounib could move his feet, sit down, eat with his hands, and laugh for the very first time.
The Origin of Spina Bifida
According to the Mayo Clinic, the term spina bifida refers to a birth defect that occurs when the spine and the spinal cord don’t form correctly. Normally, the neural tube is supposed to form early in the pregnancy and close up by the 28th day after conception. When a baby is born with spina bifida, there is a portion of the neural tube that fails to develop or close properly which causes the birth defect in the spinal cord and in the bones of the spine.
There are three different types of spina bifida and the severity of each type ranges from mild to severe, depending on the type, size, location and the complications of the defect (Source: Mayo Clinic Staff, 2018).
The first type is known as spina bifida occulta. The name “occulta”, means “hidden” and indicates that a layer of skin covers the malformation, or opening in the vertebrae. This is the mildest and most common form that is present in 10-20 percent of the general population (Source: National Institute of Neurological Disorders and Stroke). The Mayo Clinic also mentions that most people don’t even know they have spina bifida occulta until they get an image screening test performed on them.
The second type of spina bifida is known as meningocele. This is where the protective membranes around the spinal cord, known as meninges, push out through the opening of the vertebrae and forms a sac filled with fluid (Source: Mayo Clinic Staff, 2018). The sac does not include the spinal cord, so the chance of nerve damage is very unlikely but could result in complications later in life.
The third type known as the open spina bifida, myelomeningocele, is the most severe out of the three types. This is where the spinal canal is open along several vertebrae in the lower or middle back. According to the Mayo Clinic, the membranes and spinal nerves can push through this opening at birth, form a sac on the baby’s back and expose the tissues and nerves. Myelomeningocele can also be so severe that it affects the individual’s ability to walk, sit, sleep, eat and causes bladder and bowel dysfunction (Source: National Institute of Neurological Disorders and Stroke).
Looking for the Cure
Although the cause of spina bifida is still a mystery, some research studies have suggested that the cause might be due to an insufficient intake of folic acid in the mother’s diet which plays a major role in causing spina bifida and other neural tube defects (Source: National Institute of Neurological Disorders and Stroke). Additionally, scientists also think that the cause of spina bifida might stem from genetics, nutrition and environmental factors. Since there is no absolute cure, the symptoms may also vary from person to person depending on the type and severity of the condition.
What Can We Do?
After treatments, most children with spina bifida may need assistance in strengthening and improving their mobility skills and other children may need access to mobile equipment that can get them from one place to another. Recently, the World Forgotten Children Foundation (WFCF) partnered up with many organizations worldwide such as the Imani Project to help children in developing countries receive access to supportive apparatuses and customizable wheelchairs.
To find out more about how you can help children with spina bifida in developing countries, please visit the WFCF Get Involved Page (http://www.world-forgotten-children.org/volunteer).
Children's Hospital. (2014, March 31). Spina Bifida Causes, Symptoms and Treatment. Retrieved from https://www.chop.edu/conditions-diseases/spina-bifida?gclid=CjwKCAjw5pPnBRBJEiwAULZKvnpZzW1OfqyGSrn8EDZPOur2Rm-5-MvPUKpqR55cTepmjocRorFMdhoCJ68QAvD_BwE
Mayo Clinic. (2008, November 12). Spina Bifida Surgery. Retrieved from https://newsnetwork.mayoclinic.org/discussion/spina-bifida-surgery/
Mayo Clinic Staff. (2018, March 09). Spina bifida. Retrieved from https://www.mayoclinic.org/diseases-conditions/spina-bifida/symptoms-causes/syc-20377860
Miles, M. (2006). Children with spina bifida and hydrocephalus in Africa: Can medical, family and community resources improve the life chances? Retrieved from https://www.independentliving.org/docs7/miles200609.html
National Institute of Neurological Disorders and Stroke. (n.d.). Spina Bifida Fact Sheet. Retrieved May 22, 2019, from https://www.ninds.nih.gov/Disorders/Patient-Caregiver-Education/Fact-Sheets/Spina-Bifida-Fact-Sheet#3258_8