One of the most prevalent disorders that children are born with is spina bifida. The name is Latin for split spine and it comes with a vast array of symptoms, from barely any at all to a form so severe it means that a patient may never walk.
With such a broad spectrum it can be something that many people are born with but never know about or it can be something that makes a life very difficult to lead. In fact, just fifty years ago, only 10% of babies with spina bifida made it past their 1st birthdays. Today, that number has grown as we research and perfect ways to either avoid it happening in the first place or better treat those who are afflicted.
Spina Bifida is a neural tube defect, meaning that it is a problem involving the brain and spinal cord. Many with the disorder also have hydrocephaly which may require a shunt to drain the excess spinal fluid out of the brain. Although there are various types, the main category is myelomeningocele or ‘open’ spina bifida where there is an obvious hole caused by the incomplete closing of the backbone and membranes around the spinal cord during gestation. It cannot be cured but instead surgery and therapy is required to deal with the symptoms that may include leg weakness, orthopedic abnormalities (feet, hips, knees), poor kidney function, pressure sores and skin irritation.
Babies with myelomeningocele spina bifida typically have surgery to close the hole a few days after birth and may experience problems as they grow up like not being able to walk, problems with bladder and bowel control, a tethered spinal cord and, in 68% of kids with spina bifida, an allergy to latex. This allergy can be anywhere from mild to life threatening and should not be taken lightly.
The most common location of this ‘incomplete closing’ is the lower back, though in some cases it may have happened in the middle of the back or even the neck area. It is thought to be a combination of environmental and genetic factors that work together to produce this defect. As most pregnancies are unplanned, it is considered a good thing if women of child bearing years take folic acid daily. Increasing folic acid will help to eliminate spina bifida from occurring, as not enough folate is said to be one of the causes. Other causes include obesity in the mother, the mother taking anti-seizure medication, the mother having not well managed diabetes and the mother already having had a baby with the condition.
And then there are the cases of spina bifida occulta that may go unnoticed for a lifetime. Here there is no obvious hole in the lower back or anywhere else, there may be a dimple, a dark spot, swelling or a hairy patch where the problem is, but it is so minor that many may not even notice. This is the ‘hidden’ form of the disorder and usually doesn’t bring any significant challenges with it.
The term meningocele spina bifida lies somewhere in the middle of the spectrum. It brings with it mild problems and is usually detected by a sac of fluid present at the gap in the back. Much study is still ongoing concerning whether or not fetal surgery is better than waiting until the baby is born to close the opening. More research is on tap to see if the benefits of doing in-utero surgery outweigh the risks to both mother and unborn child. For now, there are several tests that a pregnant woman can take that will show if her baby will be born with spina bifida. Ultrasounds can see the spine and can detect any problems and amniocentesis –a thin needle inserted into the mom’s abdomen so a small amount of fluid can be drawn and tested– can check for any abnormalities in the amniotic fluid.
Spina bifida can’t be cured, but the symptoms of it can range wildly from one child to the next. With more research and study there may be hope for the future of the disorder, but until then we need to give kids affected by spina bifida all the support and help that they will need to ensure they live a fulfilling life.