Thursday, May 7, 2009

What is Spina Bifida?

So what causes Spina Bifida and can it be avoided?

Understandably, as a father of a child with SB, I have done a fair amount of reading on the subject although I am not a doctor. Predictably, the answer to the causes and cures varies subtly depending upon where you are getting your information from.

The best place I have found for a very general overview of SB is at SB Myelomeningocele

The Wikipedia Entry regarding Spina Bifida is also an excellent source of information with plenty of links to related health definitions and issues.

The Spina Bifida Associaiton of America has a list of Frequently Asked Questions regarding Spina Bifida.

CAUTION: Parents of any child can drive themselves crazy by focusing on all the "what-ifs" and that is obviously not healthy. There is a lot of good information at Wiki and many good links to related medical conditions but you have to know when to say "when".

You may be feeling frustrated by evasive answers from your doctors at this point. They are being evasive for a reason. Simply put, nobody knows the exact condition of your child until they are born - and even then it can take some time. So check out Wikipedia and other sources of information but when you start to white-knuckle your keyboard, it is probably time to take a break.

Spina Bifida occurs in approximately one out of every 1429 newborns in the United States which makes it one of the most common of the permanently disabling birth defects. More children have spina bifida than those who have muscular dystrophy, multiple sclerosis and cystic fibrosis combined.

What Happens (In Parent's Terms):

At conception, your baby is just a cluster of cells which duplicate and grow until they are a flat, round cluster of cells, sort of like a tortilla. Around the 3rd or 4th week of pregnancy, that tortilla begins to curl in on itself like a rolled taco (to continue the Mexican food analogy). The baby's head will develop at one end, the legs at the other and so on with the rolled taco becoming the spinal column.

In the case of a baby with spina bifida, for some reason the tortilla does not get completely rolled together. There may be gaps or entire areas that fail to close.

Part of what makes Spina Bifida difficult to avoid is the fact that many women are not even aware they are pregnant by the 3rd or 4th week of pregnancy - and by that time the defect has already occurred.

Causes:

Presently, there is no known cause for spina bifida although there are theories.

While women who give birth to a baby with SB are slightly more likely to give birth to another baby with SB, it is unclear whether SB has a genetic component making one woman more susceptible than another. Other factors include diet, medications and environment.

It is believed that certain medications present in the body during the first weeks of pregnancy may contribute to SB. The medications most cited are anticonvulsants and diabetes medications.

Additional possible causes often cited are: Obesity, being too hot during the first few weeks of pregnancy (such as a hot tub, hot shower, fever, electric blanket), and binge drinking during the first few weeks of pregnancy.

So what can a normal woman do to decrease her chances of have a baby with SB?

What You Can Do:

1) Take at least .4mg of folic acid a day - even if you are not planning on getting pregnant.

It is estimated that the chance of spina bifida occurring can be reduced by up to 70% if women take folic acid supplements. It is for this reason that in 1998 the FDA began requiring that all enriched grain products in the US be fortified with folic acid.

The standard recommended supplement is .4mg (my wife's pre-natal vitamins contained .8mg - twice the recommended dosage). That being said, women who have had a child with spina bifida in the past are encouraged to take up to 5mg a day - more than twelve times the normal dosage.

Check with your doctor if a higher dosage may be appropriate for you.

For folic acid to be effective in reducing the occurrence of SB, a woman should be taking supplements at least three months before conception. For this reason, the Spina Bifida Association of America encourages all women of child bearing age, regardless of sexual activity to take Folic Acid supplements.

2) If you are on any medications, find out now from your doctor if any of them may pose a threat to a pregnancy (even if you are not planning on becoming pregnant). By the time you realize you are pregnant - it may be too late.

3) Avoid extreme heat when possible. If you are lightheaded in the jacuzzi, shower, tub etc., you have over done it.

4) Of course, binge drinking is never a good idea - and now you have one more reason to add to the list.

5) Pay attention to your body - if you think you might be pregnant, start acting as if you are until proven otherwise. Those first three to four weeks are intensely critical to your baby's development.

Of course you can do all these things and still have a child with SB (even folic acid supplements are only estimated to be 70% effective).

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