Welcome to Spina Bifida Naturally
If you are here, chances are, you or someone you love has recently had a baby diagnosed with Spina Bifida. You may have been given an overwhelming amount of information, or almost none at all. And, if the baby being diagnosed is not yet born, you may also have been given many sad and dire predictions. Trying to make sense of so much strange, frightening and unexpected information is hard and heart wrenching. We hope that some of what we can share with you will help.
There are several excellent websites that give detailed and in-depth medical descriptions of Spina Bifida in all its forms. When you are ready for that level of detail we have compiled a list of Recommended Websites. In particular, the Spina Bifida Association has a wealth of information available. Many areas have Active Chapters who will be glad to welcome and assist you in person, and who can provide a wonderful resource for all things day-to-day with Spina Bifida.
Having been in your shoes ourselves, we have attempted to compile a list of all the questions that were forefront in our minds when we first received our diagnosis.
What is Spina Bifida?
Spina Bifida, which means “split spine,” is the most common, permanent birth defect occurring in the United States. Sometime in the first twenty-eight days of pregnancy, often before you have any idea you might be pregnant, baby’s spine develops. Spina Bifida occurs when some part of the spine forms only partially and fails to completely encircle the column of nerves inside. Most commonly, some of the spinal column covering (dura) and the nerves protrude into the opening. This is called myelomeningocele, and is considered the “most severe” form of Spina Bifida. Other types also do occur, less often and typically with less overall impact. If you’ve received a Spina Bifida diagnosis other than myelomeningocele, you can read about the different types of Spina Bifida here.
My doctor said some pretty terrifying things. . .
Very poor quality of life. Crippled. Never walk. Brain defect. Brain damaged. Not compatible with life. Medical termination.
Unfortunately, most of us heard at least some of those words. It hurts. Its horrifying. And it is totally overwhelming. Sadly, the specialty of obstetrics is not often current with other specialties, and the information they are using is often very seriously outdated or just plain incorrect. We are sorry this was your introduction to the world of Spina Bifida. We went through it too. We know just how awful and traumatizing it can be. We also know that those things are just not true. Your baby will grow and thrive and amaze you. They will be just as poised as any other to lead a full and satisfying life.
To find out "The Truth About Spina Bifida" we highly recommend reading this informative editorial that gives all the statistical facts that should have been given to you by your OBGyn and Maternal/Fetal Medicine Specialist (MFM). Written by two doctors who were fed-up with the misinformation being perpetrated on newly diagnosed parents, this editorial presents the true story and encourages other OBGyns and MFMs to do the same.
What else is wrong? What are all these other things the doctor mentioned?
There are several markers that often accompany this diagnosis. You may have been told that your child exhibits the lemon or banana sign, has a Chiari II malformation, enlarged ventricles and/or perhaps has club feet. These are all part of the same diagnosis in the same way that having severe bruising and abrasions is part of the diagnosis of a broken bone.
Please don't let all these terms alarm you; most of them sound worse than they really are. Though your OB doctor means well, he or she is not an expert on Spina Bifida. The real expert on your child's diagnosis is a pediatric neurosurgeon. If you haven't scheduled an appointment with one yet, we recommend you do so as soon as possible. Your child's pediatric neurosurgeon is better qualified to interpret your ultrasound results and give you an accurate prognosis for your child's future.
In the meantime, please come introduce yourself in the Community Forum and let us attempt to put some of your fears to rest. Not only have we been there ourselves, but we have heard from hundreds of moms just like you, who have been treated by doctors and hospitals all over the nation, and even the world. Let us give you a virtual hug and attempt to answer some of your many questions.
My doctor says we need to rule out other genetic conditions. What about that?
Children with Spina Bifida are no more at risk for genetic conditions, such as Down’s or Edward’s syndrome, than any other children. Doctors often seem to feel that any one diagnosis suggests they should look for everything. It can be frightening in the face of one unexpected diagnosis to think there could be even more wrong. Odds are there isn’t anything else. The decision for further testing is personal, specific to your family, and totally up to you. An amniocentesis is the test most doctors seem to prefer, but it does come with some risks. There are also non-invasive, molecular tests for many of these same conditions that use only a blood sample from mom.
Will my baby survive?
Yes! Oh yes! Once upon a time the chance of survival was very low, but medical science has made great strides in the last several decades. Babies with Spina Bifida do need extra medical care shortly after birth, but provided they receive it, they are at no greater risk of dying than any other baby. To see pictures of our happy and adorable babies, please visit the Photo Gallery
Will my baby be a vegetable or suffer from severe brain damage?
Absolutely not! Most, but not all, babies with Spina Bifida develop issues with the appropriate circulation of spinal fluid. This can build up and cause hydrocephalus. Part of the care your baby will receive after birth will be to monitor this and intervene if necessary. Again, provided appropriate care is given, babies with Spina Bifida have average to above average intelligence. Some do have specific learning challenges, but informed parents and educators can identify these readily and assist their children in overcoming them.
Will my baby be able to walk?
The answer to this varies from child to child. The area of the opening in the spine, often called the “lesion level” can give some general clues prior to birth. Nerves above the opening will be unaffected and provide typical function to their corresponding body areas. Nerves below the opening may or may not be affected. There is no way to tell with certainty prior to birth. Children with the exact same opening will often have different functional abilities. It is a frustrating part of expecting a child with Spina Bifida that the most accurate answer to many questions about what a child will be able to do is, “Wait and See”. Many children with Spina Bifida walk, at least some of the time. Some require assistance to do so, such as braces or walkers, some require nothing at all. Some children never walk and use a wheelchair from a very early age. Some walk, but find long distances tiring and use a chair intermittently depending upon the circumstances. It is important to remember that mobility is not the same as walking, and that all children with Spina Bifida will be able to independently navigate their world, one way or another. To see our children in action, please visit the Blogroll, where you will find a list of blogs about children with diagnoses similar to your own.
So why did this happen? What did we do wrong?
Up until now, this page has been about what Spina Bifida is. Let’s talk, for just a minute, about what it is not. This is not your fault. You did not do something wrong. Really!
This did not happen because you are too young or too old. It isn’t because of that Mexican cheese or the hot tub weekend. It isn’t because you weren’t taking the right vitamins, or weren’t taking any vitamins. The truth is, with Spina Bifida there is no smoking gun. There have been different theories circulating at different times, but those people who have researched this topic for the longest believe that it is the result of a combination of environmental, genetic and nutritional factors that come together in just the right way. As of yet, no one has been able to identify exactly which factors or what combination of them is the exact cause.
Folic acid gets a lot of press. In statistical evaluations it does appear to help overall, but many moms were carefully taking just the right amount, were in top health and still found themselves facing this diagnosis. Don’t let the folic acid statistics make you feel guilty. There are other stats too. For example, more babies born with Spina Bifida are conceived in the spring and are more likely to be of Celtic or Hispanic ancestry. All of these things are interesting, but none of them make you guilty of causing harm to your baby.
You have a lot ahead of you, a lot to prepare for and do. You will doubtless have up and down times emotionally. That is totally normal and to be expected. Be kind to yourself and spare yourself the self-inflicted pain of guilt. Breathe deeply. Keep reading, here and elsewhere, about what to do next and about just how delightful life is going to be with your wonderful baby.
It all gets better from here!