Spina Bifida

Spina bifida is a birth defect affecting the spine. The Centers for Disease Control conducts regular studies regarding the rate of occurrence of spina bifida in live births. Their latest study, conducted in the period from 2003-2005, reports that 1.9 out of 10,000 children were born with spina bifida.

According to the California Birth Defects Monitoring Program, this year (2009) in the United States, an estimated 2,790 children will be born with spina bifida.

Based on the type of spina bifida a child may be afflicted with at birth, additional care and support may be required throughout their entire life. Some children will recover more easily with a mild case of spina bifida.

There are three types of spina bifida. The types are determined by the extent of the malformation in the spine:

Spina Bifida Occulta - This is the least serious type of spina bifida. There is no opening in the back and the spinal defect is covered by the skin. While treatment may still required, this type of spina bifida usually does not cause disability.

Meningocele - In this type of malformation, some of the outer part of the vertebrae may be unfused at birth and some of the spinal cord may be tethered or damaged, but there are often no long-term affects. This is the least occurring form of spina bifida.

Spina Bifida Cystica (myelomeningocele) - This is the most serious type of spina bifida and often leads to life-long paralysis (among other ailments) below the point of the spine where the defect resides.

Photo used under Creative Commons from orangeacid.

No one knows yet what causes spina bifida. Scientists suspect that the cause may be tied to nutrition of the mother in some fashion. For awhile, it was suggested that perhaps a folic acid anti-body was the problem. Maybe the mother's body was rejecting the benefits of folic acid.

Recent studies have proven that is not the case.

A Spina Bifida References Report states that:

The more severe the spina bifida, the worse the social participation. The authors conclude that, "Social integration should be a major focus in the professional guidance of youngsters with physical disabilities."

What does that mean? That means kids with spina bifida who have serious side affects need contact with other children. They need exposure to typical events and activities participated in by children. Establish friends their own age, go to camp, go to parties, have hobbies.

As a parent, you can help by filling those gaps where they might not happen naturally. Find resources in your area through your local spina bifida association. Attend group functions and events. Help your child experience the fullness of life.

Photo: http://www.flickr.com/photos/gemsling/ / CC BY 2.0.

Children born with the more serious forms of spina bifida face life long health issues. Not only must they deal with everything that goes along with being paralyzed - such as bed sores, hot spots, and potentially unnoticed injuries to their limbs - but there are many other conditions that can affect someone with spina bifida. These include:

Hydrocephalus - swelling of the brain which requires a shunt be installed to constantly drain the excess fluid.

Chiari II malformation - a change in the way the brain is positioned which can cause hydrocephalus.

Latex allergies - Well more than half of all of those with spina bifida develop allergies to latex. While the cause is not clear, popular thinking is that this has to do with the intense exposure to latex at an early age due to the number of surgeries required during treatment.

Urinary tract infections and kidney disorders - Due to paralysis, individuals with spina bifida may not have complete control of their bladder and this can result in infection.

Tethered spinal cord - In some cases, the spine is affected such that it does not move normally but is held in place resulting in stiffness and back pain. This can most often be treated.

October is spina bifida awareness month
but you can do something
TODAY.

There are many ways to contribute to a charitable association and they don't all require significant time or money. Of course now that I've said that:

Money - Money is often the resource most needed by these organizations. An association builds programs that help those with the disability and those programs need funding. They need money. In this current economy, those with the least are suffering the most and all charitable organizations are feeling the pain. That means that people - children and adults - already faced with very serious health issues - are suddenly finding themselves with even less than they had before. If you are fortunate enough to have extra, no matter how small it might be, think about what that little bit would mean to one of these associations. Donate.

Time - Want to help but can't donate money? Donate your time. The work is rewarding and you can contribute as little or as much as you like. Find your favorite organization and go to their web page. They'll often have a link for those who want to help. If not, call them. They'd greatly appreciate the assistance.

Goods and Services - I know, it's so much easier to just throw some stuff away when you don't need it anymore - even if it's still in working order. Before you ditch that next portable basketball hoop or hockey table, take an extra few minutes and contact an organization in your area. They might be able to make use of it in their own camp or training programs.

Good Search - You're on the web anyway, why not use a search engine that pays the organization of your choice for every search you make? No extra time or effort on your part and yet every click on Good Search will benefit someone else. How much easier does it get? In fact, it takes away almost any excuse you might have had about contributing.

Write - Join me on Squidoo and write about your favorite cause. Help them gain focus on their organization. Every little bit helps!

I am not a doctor and have no medical training.

I am a mother.
My three boys are healthy and happy. There are no instances of spina bifida in our family. However, I have felt the shuffling emotions of joy, fear, love, and sorrow that come with motherhood.
For each of the three children I hug and kiss at night, I have one child who did not survive pregnancy.
Three children I kiss only through the wings of angels.

I am a writer and researcher.
I can spend hours alone with the tools of words - the pen, the paper, my laptop. I read, I research, I constantly seek to know more.

I am the daughter of a selfless man.
My father, in his retirement, donates his time, money, and skills to a spina bifida foundation and the least I can do is to help him draw attention to this cause.