Spina Bifida is basically a birth defect which involves partial or incomplete development of the spinal cord. ‘Spina Bifida’ is a Latin term used to describe an open spine. It is a kind of malformation that appears during early fetal development. These malformations are mostly seen in lower back or at the level of hips. According to recent reports, every year 250,000 to 400,000 babies are born with spina bifida world-wide. When young women & new mothers in general, are given proper education about daily routine, diet & actions which can affect their babies, number of cases of Spine Bifida could be greatly diminished.
What is Spina Bifida?
Spina bifida is a form of congenital defect known as neural tube defect that causes incomplete formation of the spine area that surrounds the spinal cord. This defect is most commonly seen in the lower back region but rare cases often have defects in the middle of the back & the neck. Spina bifida cannot be actually termed as a disease as this is not a contagious condition but rather an acquired developmental disability stemming from a neural tube defect in the child during pregnancy.
Medical research has not been able to determine the exact cause of spina bifida. However, experts believe that genetic & environmental factors play an important role in determining development of this birth defect. Women with a previous child afflicted with spina bifida have been found to have more chances of giving birth to another child with spina bifida. Obesity & diabetes in women increase chances of the newborn to be having spina bifida.
Spina bifida is totally a congenital defect & occurs in children right after their birth. It has not been known to develop in healthy children at a later stage. This birth defect is suspected to be influenced by certain hereditary & environmental factors such as prevalence of this defect in the family as well as diabetes & obesity in the mother. There are certain risk factors that have been identified & are known to increase chances of a child being born with spina bifida. They are described as below.
- Race – Caucasians & Hispanics have been found to be more prone to developing spina bifida.
- Sex – Girls are known to be at more risk than boys in developing spina bifida at birth.
- Hereditary – Couples with a child suffering from neural tube defect have higher chances of giving birth to another baby with the same condition.
- Vitamin Deficiency – Folate is a natural form of vitamin B-9 which is important for healthy development of babies. Deficiency of folate has been known to increase risk of neural birth defects such as spina bifida in children.
- Medications – Anti-seizure medicines such as valproic acid, when taken during pregnancy, are suspected to hinder body’s ability to use folate & folic acid that can result in the baby developing neural tube defects.
- Diabetes – Women with unregulated blood sugar levels during pregnancy due to diabetes increase risk of spina bifida in the unborn child.
- Obesity – Pre-pregnancy obesity is known to cause neural birth defects in the child after birth.
- High Body Temperature – Hyperthermia (increased body temperature), especially during the first few weeks of pregnancy also increases risk of spina bifida.
Baby’s symptoms will depend upon the severity of defect. Majority of children with spina bifida do not suffer from any significant issues. However, children with the most serious kind of spina bifida often have spine & brain issues that cause harsh problems. They may have the following signs & symptoms.
- Mobility – Slight or absolutely no feeling in feet, legs or arms, which may affect mobility of patients.
- Bowel Problem – Bowel or bladder problems, such as urine leakage or having tough time passing stools.
- Hydrocephalus – Building up of fluid in the brain (hydrocephalus).
- Spinal Deformity – Undesirable spinal curve such as scoliosis.
There are four main types of spina bifida which are elaborated below.
- Occulta – It is one of the most common & mildest forms of spina bifida. With this condition, one or more bones that build up the spine fail to form properly. Term ‘occulta’ means ‘hidden’ which signifies that the malformation or opening in spine is enclosed by a layer of skin. However, this kind of spina bifida does not necessarily cause disability or symptoms.
- Closed Neural Tube Defects – This is another type of spina bifida. It generally consists of a cluster of spinal defects in which the spinal cord is evident by a malformation of bone, fat or membranes. In many patients, there are no symptoms, while in others, deformity causes partial paralysis with bowel & urinary problems.
- Meningocele – In this condition, meninges which is a protective covering around spine stand out from the spinal opening & may or may not be enclosed by a layer of skin. Patients with meningocele may show or completely do not have any symptoms. Others may observe symptoms that are identical to closed neural tube defects.
- Myelomeningocele – It is the fourth kind of spina bifida & is the most severe. This appears when the spinal cord stands out through the opening in spine causing partial or complete paralysis of body parts below the spinal opening. It may result in severe health conditions which sometimes adversely affect & disable bowel functions of patients.
Spina bifida can be detected during an ultrasound scan which is generally carried out during mid-pregnancy.
- Screening in Pregnancy – Pregnant women usually undergo mid-pregnancy scan. This scan is normally carried out when patients are between 18 & 20 weeks pregnant. This scan is also referred to as the anomaly scan. It identifies physical abnormalities in the baby, including the condition of spina bifida. If tests confirm that a child has spina bifida, surgeons will discuss implications with patients.
- Important Tests After Child Birth – After a baby is born with spina bifida, a series of tests are generally carried out to assess severity of the condition & aid in deciding which treatments are suitable. This may include tests like CT scan, a magnetic resonance imaging test (MRI), ultrasound test & complete assessment of baby’s health to check for paralysis & other adverse conditions. However, in most cases, surgeons recommend surgery to repair spine after a baby is born.
Surgeons will likely diagnose baby’s condition when a mother is expecting or during mid-pregnancy. In addition to surgeon, which one may have selected to care for them during pregnancy, an expecting mother should also meet a team of physicians, surgeons & physical therapists specializing in spina bifida treatment. As appointments can be brief & there is a lot to discuss, it can be a good idea to be well-prepared. One should obey the following instructions for getting a positive outcome.
- Pre-Appointment Instructions – Patients should be aware of all pre-appointment instructions. Patients should ask surgeons if there is anything which may be needed to do in advance, such as drinking excessive amounts of water before an ultrasound test.
- Medications – Patients should prepare a list of all medications, including vitamins & supplements that they are currently consuming.
Preparing a list of important questions ahead of time can help parents make most of their time with surgeons. For spina bifida, some basic queries to ask surgeons include the following.
- What is Spina Bifida?
- Is spina bifida present in my baby & how severe is it?
- Can my child live a normal life post-treatment?
- How will you treat my child?
- Will there be any complications post-surgery?
- What are the chances of this happening again in future pregnancies?
- What precautions can I take to avoid this condition in future?
- Are there any relevant brochures or other material that I can take with me?
- What essential websites do you suggest visiting?
In addition to these questions, patients should not hesitate to ask any other doubts as well during initial appointment.
Treatment method for spina bifida is mainly dependent upon severity of the condition. Mild forms of spina bifida usually do not require any kind of treatment as they do not show significant symptoms or related complications. More severe cases of spina bifida need to be treated as soon as possible in order to relieve disabling & often painful symptoms. Following are different types of treatment options for spina bifida.
- Surgery – More severe forms of spina bifida such as meningocele where the enveloping tissue sheath around the brain & spinal column (vertebras) get affected, need surgery to put it back in its natural place. Most severe form of spina bifida is known as ‘myelomeningocele’ in which under-developed (gaps) of spinal column cause the spinal column to protrude from inside. This type of spina bifida needs to be treated within the first 24 – 48 hours after birth of the baby. Surgical intervention can help decrease risk of infection to the exposed nerves as well as help in protecting spinal cord from trauma in future. Surgery involves surgeons placing the exposed spinal cord & nerves inside the baby’s body & covering them with muscles & skin.
- Prenatal Surgery – This surgery is performed when the unborn baby is diagnosed with spina bifida. Surgeons will perform prenatal surgery before the 26th week of pregnancy. This procedure requires the surgeon to gain access into the mother’s uterus for performing the required correction in the baby’s spine. This is a preferred surgical method as surgeons & doctors believe that prenatal surgery gives the baby a natural chance to repair the minor damage to spinal cord while still in developing stages inside uterus.
- Ongoing Care – After initial surgery for severe forms of spinal bifida (myelomeningocele) it is necessary to get post-surgical treatment from a team of expert surgeons, physicians & therapists for reducing symptoms of complications.
Most children with spina bifida can live an active, productive & full life especially with support & encouragement from loved ones. Even after surgery of severe spina bifida cases, most kids can walk for at least short distances, mostly with assistance of canes, crutches or braces, although they may need support of wheelchairs for going longer distances. These helpful devices can help kids compensate for their condition & gain much more independence. Proper guidance & support can help children stay away from any emotional baggage & live with a positive attitude.
Spina bifida surgery may cause minor physical disabilities. Frequently, it may also lead to severe mental disabilities. Common complications of spina bifida surgery include the following.
- Physical & Neurological Problems – This may include lack of normal bladder & bowel control & complete or partial paralysis of legs.
- Accumulation of Fluid in Brain (Hydrocephalus) – Children born with myelomeningocele, usually experience fluid accumulation in brain, a condition called as hydrocephalus.
- Infection – Some babies may suffer from condition of meningitis, even after surgery, an infection in tissues enclosing the brain, which can be life-threatening as well.
- Other Complications – Kids may experience skin problems, latex allergies, gastrointestinal disorders, urinary tract infections & depression.
With proper treatment & help, children with spina bifida can lead full lives. Most kids do well in school & can play smoothly during sports. Due to advancement in medical technology, about 90 percent of kids born with spina bifida now live to be adults; about 75 percent have normal intelligence & about 70 percent play sports & other activities. As the level & type of severity differs among patients with spina bifida, each patient suffering from this condition faces different challenges & may need different kind of treatments.
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