WHAT IS SPINA BIFIDA?
Spina Bifida is a problem that occurs very early on in pregnancy, usually before a woman even knows she is pregnant. The spinal column and brain are the first parts of a baby to develop and in cases of Spina Bifida the spinal cord (containing the nerves that send the body messages from the brain) is not protected. In the most common and severe cases, the bones, muscle and skin that should completely cover the spinal cord doesn't do so and there is a wound-like opening on the back that exposes the cord. This form is called myelomeningocele. There are also two other types of spina bifida that are less common and less severe. To learn more about the three major types of spina bifida, check out this spina bifida fact page from the Spina Bifida Association. Also, here is the link to an awesome animated Youtube video done by the SB Resource Network which explains the most common form of SB.
HOW COMMON IS SPINA BIFIDA?
According to the Spina Bifida Association of America "Spina bifida (SB) is the most common permanently disabling birth defect in the United States." The March of Dimes reports that SB affects about 1,500 children a year. This averages out to be about 1 in 2,500 children affected.
WHAT KINDS OF DIFFICULTIES CAN SPINA BIFIDA CAUSE?
Each case of spina bifida is unique. No doctor or professional can predict pre-birth exactly what issues a child with SB will face. The most important question is not the 'lesion level"... which is where the spinal defect starts (most cases begin somewhere in the lumbo-sacral region) but which nerves are actually involved. Even though imaging technology has become very sophisticated, this information cannot be known until after birth. But generally children with spina bifida will need some support in walking. They may use nothing but an ankle brace that is invisible in a shoe to higher braces, to forearm crutches and in some cases, wheel chairs. Many cases of Spina Bifida require treatment for another problem called "hydrocephalus". Hydrocephalus is excess spinal fluid that becomes trapped in the brain. Hydrocephalus can occur in utero or after spinal closure surgery. Treatment for this issue may require a shunt to drain off the excess. Something called "tethered cord" is also often associated with spina bifida. Tethered cord is often present in cases of spina bifida but does NOT cause problems in every case. It must be monitored to see if sympoms result. Here is a good video about tethered cord done by Children's Hospital Boston. You can consult this interactive chart to see what part of your spine controls what functions of your body. But remember, even if you know the "level" of the defect, you still can not be certain what a person with SB will or will not be able to do. The human body is a fascinatingly complicated machine and the human will is an unmatched force of nature.
CAN SPINA BIFIDA BE PREVENTED?
Some cases can be prevented by the use of folic acid. However, many cases are not preventable because researchers and professionals don't fully understand what causes spina bifida in the first place. Genetics may play a part. Environment may play a part. But children of all races are at risk for this defect. Spina Bifida can happen to anybody.
WHAT IS ARNOLD CHIARI MALFORMATION?
Arnold Chirai almost always accompanies cases of spina bifida. It is one of the first signs that a physician can see on an ultrasound to indicate the possibility of spina bifida. Doctors use the terms "lemon sign" and "bananna sign" to refer to arnold chiari malformation. But Arnold Chiari is not the same as "brain damage"! Nor does it mean the baby's head will be shaped funny at birth. Basically the brain and spinal cord are a set of water pipes. If there is a leak in the pipe (as in the case of a spina bifida opening,), the pressure changes and all the water (or in this case cerebro-spinal fluid) seeps down toward the leak. In the developing fetus, this change in pressure and the resulting "drain" down the back are enough to pull the brain backwards. This means the frontal cortex retreats and pulls in at the sides...like a lemon. While the cerebellum (which should be butterfly shaped) gets pulled backwards toward the neck and squishes out to look like a banana. By its self this malformation changes the shape of the brain but not its function. In other words, parts might be shaped differently, but they still work exactly the same. Although the doctors refer to the chiari as making the baby's head "lemon shaped", this actual change is minor and you won't see it when the baby is born. In fact, as the baby grows and the soft bones in his/her head harden, they will look EXACTLY like any other baby's! The main problem from the arnold chiari malformation occurs if part of the hindbrain herniates down the neck INTO the spinal canal and causes a blockage or simply slows the natural flow of fluid. Then, when you only had a leak before...now you have a leak in the bottom and a clog at the top. This results in hydrocephalus (or excess fluid on the brain). These days hydrocephalus is manageable and, if treated properly, causes no loss of intelligence.
HOW IS SPINA BIFIDA TREATED?
Spina Bifida is not new. Evidence of it has been found back as far as the first century in Egypt. But certain treatment options such as shunts have only recently become available. (Invented in 1955 by a mechanic by the name of John Holter). If the spina bifida lesion is "open" surgery will usually happen shortly after birth to close the lesion. There are also fetal surgery options at several hospitals in the United States in hospitals like CHOP and Vanderbilt. The risks and benefits of such a procedure can be found here and are based upon a recent study called the MOMS study. Most major hospitals have a multi-disciplinary spina bifida clinic which is composed of Maternal and fetal medicine specialists, pediatric neurosurgeons, urologists, orthopedists, physical therapists and more. Modern treatment for this disease has made the prognosis great!
CAN PEOPLE WITH SPINA BIFIDA LEAD A FULL LIFE?
Absolutely! But don't take my word for it. Ask an adult who has SB. They hold jobs, have children, live happy lives. Or talk to the mother of a child who has SB and see the pictures she has of her smiling baby or small child. Some people with SB go to college, some get jobs right out of HS. They hang out with friends. The decorate their homes. They do all the things everybody else does. They just might do them a little differently. There are several Internet forums where people who have SB gather. Many are open to answering a question from somebody who has a family member with SB, or a mom who just learned her child has SB, or just somebody curious about SB. You can find a forum here if you are looking to connect with moms and dads with kids with SB or here if you are looking to talk to a mixture of the entire SB community. Yes, these forums have people honest about their struggles and frustrations. But they are also honest about their joy and their triumphs. Of course there are also tons of blogs out there like mine. Just check out the blogs I "follow". Many of them are by moms and dads whose kids have SB. I am also open to any questions. Just leave me a comment and I'll reply.
OTHER SB RESOURCES
If your child has just been diagnosed with SB, there are a LOT of resources out there for you. First, check out this blog done by a mom who asked people with SB what things they can do that their doctor told them/their parents they could never accomplish. Also, here is a video (part of a series put on by the CDC) called the Spina Bifida Experience. It introduces you to four different young people and their families. You can also find your local chapter of the spina bifida association which hosts meetups and events. Also, even if you make too much money to qualify for medicaid, most states have a supplemental medicaid program which will help pay for supplies so you don't have to pay out of pocket for equipment. You just have to google your state's program and request more information. Also some parents qualify for SSI, to help pay for the care of their child depending on many factors such as the impairment of the child and the income level of the family. Many children with SB do not qualify as "disabled" for the purpose of receiving SSI but some do. You can check with a local social security representative or even with a social worker at the spina bifida clinic to find out more. Shriner's hospitals are also a great resource and if they take your case, you can go there FREE! Check out their info here. Medicaid also offers a waiver program which can help pay for some in-home care if your child needs it- such as having physical or occupational therapy in the home. Because of the way the law is written often children with SB are included in this waiver simply because of their diagnosis. For info on what this waiver is click here. You can contact your local/state medicaid office for more information. Early Intervention is also a WONDERFUL program that is run by the states and provides physical and occupational therapy and will, as well, as assess and make a treatment plan for any other developmental needs. Its often a free service! There are also tons of things for your child once he/she gets older. There are special camps such as the hole in the wall camps which work exclusively with kids with medical problems to give them broad experiences with kids with other kinds of disabilities in a safe environment. Also, there are alternative physical therapy programs out there that may be free or reduced to your family. For example, Theraputic Horseback Riding which can be of benefit to some children with SB. Hydrotherapy (water based physical therapy) is also a great thing- these centers are scattered throughout the country and you will simply need to google "water therapy" or "hydrotherapy" and your city to find out more information there! There is help and there is support out there if only you ask for it.