Sunday, October 11, 2009

What is October??

It is October, and that means fall is on it's way, it's time to head to the pumpkin patch or here in our world Avila Valley Barn, and it's time to think about what kind of fun costumes we can dress up in, but do you know what else October is? Are you aware that October is Nation Spina Bifida Awareness month? We do, because we live with Spina Bifida EVERYDAY in our family.

Nathaniel in Sept 2009
This truely amazing little boy, one of the loves of my life, was born with Spina Bifida. Do you know what that means? Do you know what Spina Bifida is? Well this is the month I tell you all about it! And it is the time I share a brief glimps into our lives and what we do daily!
Nathaniel about 6 months old (Dec 2000)

Spina Bifida is the most commonly occuring permantely disabling birth defect in the United States. Birth defects like Spina Bifida occur in 7 out of every 10,000 live births in the United States. Did you get that.... PERMANETLY DISABLING... as in NO cure! It's something these people live with EVERY DAY of their lives. This birth defect occurs in the first weeks of pregnancy when the spine fails to close. The effects of Spina Bifida are different for each person and there is no know cure or prevention for Spina Bifida.

Nathaniel on his first birthday (June 2001)

There are three different types of Spina Bifida:
Occulta Often called hidden Spina Bifida, the spinal cord and the nerves are usually normal and there is no opening on the back. In this relatively harmless form of Spina Bifida, there is a small defect or gap in a few of the small bones (vertebrae) that make up the spine. There may be no motor or sensory impairments evident at birth. Subtle, progressive neurologic deterioration often becomes evident in later childhood or adulthood. In many instances, Spina Bifida Occulta is so mild that there is no disturbance of spinal function at all. Occulta can be diagnosed at any age.
Meningocele The protective coatings (meninges) come through the open part of the spine like a sac that is pushed out. Cerebrospinal fluid is in the sac and there is usually no nerve damage. Individuals may suffer minor disabilities. Additional problems can develop later in life.
Myelomeningocele This form of Spina Bifida occurs when the meninges (protective covering of the spinal cord) and spinal nerves come through the open part of the spine. This is the most serious type of Spina Bifida, which causes nerve damage and more severe disabilities. This is the type of Spina Bifida that Nathaniel has.

Nathaniel, age 20 months, in his parapodium stander, tryign to teach him what it feels like to be upright to encourage him to work on standing.


In the United States, there are 65 million women of childbearing age and each one is potentially at risk of having a pregnancy affected by Spina Bifida. Birth defects can happen in any family. In fact, 95 percent of neural tube defects (NTDs) occur in women with no personal or family history of NTDs. However, according to the CDC, some risk factors are known:

~A previous NTD-affected pregnancy increases a woman's chance to have another NTD- affected pregnancy by approximately 20 times
~Maternal insulin-dependent diabetes
~Use of certain anti-seizure medication (Valproic acid/Depakene, and Carbamazapine/Tegretol);
~Medically diagnosed obesity;
~High temperatures in early pregnancy (i.e., prolonged fevers and hot tub use);
~Race/ethnicity (NTDs are more common among white women than black women and more common among Hispanic women than non-Hispanic women); and
~Lower socio-economic status

These are jsut rough guidlines, no one knows for sure why any one individual gets Spina Bifida, while others that fit the same mold don't. No one can tell me why MY SON has Spina Bifida, I didn't fit any of those critera!

Nathaniel at Project Surf Camp this summer!

Studies have shown that if all women who could become pregnant were to take a multivitamin with the B-vitamin folic acid, the risk of neural tube defects could be reduced by up to 70%. Folic acid is a water soluble B-vitamin that helps build healthy cells. Because it is water soluble, folic acid does not stay in the body for very long, so women need to take it every day to help reduce the risk of neural tube defects (NTD).
Since half of all pregnancies in the United States are unplanned, women of childbearing age-even if they are not currently planning to get pregnant-should take 400 micrograms (mcg) of folic acid every day to reduce their risk of having a child with Spina Bifida. In addition, women who have experienced a pregnancy affected by a NTD like Spina Bifida need a larger prescription dose of 4000 (mcg) of folic acid daily when planning a pregnancy


Nathaniel and his buddy Blake, both of these dears live with Spina Bifida every day. To find out more about Blake and his family check out their wonderful blog HERE.

Nathaniel was BLESSED to be able to have an experimental procdure done that GREATLY changed his outcome before he was born. To read more about the early days when Nathaniel was jsut diagnosed and what we went through with the surgery check out THIS, THIS, THIS and THIS. (And remember, these were my early blogging days, so forgive my strange formating, K?)

If you want to find out more about the surgery NOW being done check this out: Management of Myelomeningocele Study (MOMS) is a research study designed to compare two approaches to the treatment of babies with Spina Bifida: surgery before birth (prenatal or fetal surgery) and surgery after birth (postnatal surgery). Spina Bifida is a complex birth defect in which a portion of the spinal cord and associated nerves as well as the surrounding spinal bones and overlying muscle and skin do not fully develop. At birth the incompletely developed portion of the spinal cord protrudes through the open bones and skin. The incomplete development of the spinal cord can occur anywhere along its length, from the neck to the lower back and results in a variety of medical problems. You may call toll free: 1-866-ASK-MOMS (275-6667) for more information.

Nathaniel Aug 2009

Children with Spina Bifida often show unique learning strengths and weaknesses that affect their schoolwork. Parents and schools need to work together to help the young people meet their physical, social, emotional, and academic goals. If you have read here for long, you know that we face many challenges with Nathaniel.

Most children with Spina Bifida have I.Q. scores in the average range. This result, however, is somewhat deceptive because there is a broad range of scores on intelligence test among children with Spina Bifida ranging from the gifted to the retarded. Also, children with Spina Bifida often have major differences among their abilities due to orthopedic and neurological problems. Both parents and teachers, however, must recognize that learning problems are routinely in children with Spina Bifida/ hydrocephalus. These problems contribute to poor academic functioning and schoolwork. Acknowledgement that children with Spina Bifida often have learning problems allows for faster recognition and help. Often parents or teachers notice that something is interfering with a youngster's success at school but they are not sure what is wrong. If the child is receiving special education services, the parent can request an Individual Education Program (IEP) be written so that these problems are reflected in the plan. We are so blessed to have such a great team working with us on Nathaniel's education!

While this may seem like a really long post, it really is just a BREIF overview of Spina Bifida and what we deal with daily. Be on the lookout for more fun SB info this month, and lots of silly pictures! And PLEASE, add those living with Spina Bifida to your prayers during this month of awareness! Each individual faces their own set of challenges EVERY DAY to live that day in our society. Each person needs prayer, grace and understanding in those around them!

Spina Bifida is VERY under funded for research and help. I know these are tough economic times, but if you are so lead to make a contribution to the national Spina Bifida Associtation at ANYTIME please visit HERE
Blessings!

7 comments:

{april kennedy} said...

This made me cry. We do live with it EVERYDAY. It is tough. I did a whole week of Spina Bifida posts last year during October. I think this year, I will just be linking to this post! So nicely done! Thank you!

hugs!

Lyndsay said...

Wow. This was a great post. Those photo of him as a baby made me smile and made my heart hurt at the same time. What a special boy.

And on a very happy note, you won my giveaway!! Please e-mail me at lyndsayjohnson@gmail.com so that Crystal can send your earring out to you. :)

Lyndsay said...

earringS, not just one....haha

Mary K., David and James said...

This totally made me cry. Thanks for spotlighting OUR cause. We went to Vanderbilt for the MOMS study (since we live in TN), but ultimately determined the surgery was not for us. We've never regretted the decision, but I am so glad we went for the interviews, because we got more information there than we ever would have gathered on our own. I wonder, too, if we'll ever have other kids because it's hard to quiet the fear that it'll happen again. I guess there is assurance in knowing that God equipped us once and continues to provide, no sense in thinking it would be any different no matter what the circumstance! Hugs to you and your family!

Melanie said...

What an amazing boy!! I am so glad you posted this, I know next to nothing about SB and will be following and learning. Thank You!!

hungeryjack said...

Nice post - spina bifida pictures ..Keep Posting


Ron
spina bifida pictures

Linda said...

What a wonderful young man Nathaniel is. Our daughter was born with the occulta form of SB 41 years ago. She wasn't diagnosed until problems appeared at age 16 at which time she underwent fusion surgery. It was a good decision which corrected her problem. We are blessed. God bless your family. Stay strong in the Lord, Nathaniel. God has great plans for you.

Linda