Friday, October 14, 2011

Spina Bifida awareness day 11

So sorry... We have had some computer (well internet) issues... Our power went out on Wed. and I think that had a effect on our wireless router. Hopefully tonight we are back in business. :) 

In continuance of my last post I wanted to talk a little more the diagnosis of spina bifida.

(I stole this definition off a website... it was much better than my explanation)
The human nervous system develops from a small, specialized plate of cells along the back of an embryo. Early in development, the edges of this plate begin to curl up toward each other, creating the neural tube—a narrow sheath that closes to form the brain and spinal cord of the embryo. As development progresses, the top of the tube becomes the brain and the remainder becomes the spinal cord. This process is usually complete by the 28th day of pregnancy. But if problems occur during this process, the result can be brain disorders called neural tube defects, including spina bifida.

There are multiple tests that are offered to diagnose spina bifida during a pregnancy. The first is a AFP test-  This is a blood test which looks for a specific protein present. If the levels of the protein are high it can be a indicator that a neural tube is present. It is very very important to note that these tests are very inaccurate. A miscalculated due date, multiple babies, and many other factors can interfere with the accuracy of the test.
If the AFP levels are high  then a ultrasound is generally done to check the baby. A look at the baby's head and spine can often determine if spina bifida is present. The best and most accurate testing performed for spina bifida is a amniocentesis. This is a testing of the amniotic fluid that surrounds the baby. In most cases spina bifida is diagnosed between the 14th and 20th week of pregnancy.

Now here is the reason that spina bifida awareness is so important to me and why my heart is so burdened!!!! You see, often times when doctors give the diagnosis of spina bifida to parents they give it in a very grim and very depressing  manner. I dare say, more times than not the information is inaccurate. I know dozens of parents who were told horrible and false information. Their child will be brain damaged, will not talk, never walk, be miserable, and have no quality of life. Parents are then counseled that the best option they have is to abort the baby and just forget about it...... My heart breaks at this.  These babies are precious and so full of life. THERE IS NO EXCUSE AND NO REASON THAT THEY SHOULD BE KILLED. NO BABY SHOULD.

Just after I found out about Carson's diagnosis I joined a online support group of other mothers of children with spina bifida. It's been one of the best things for us, and I am so blessed with friends and kindred hearts. The moms kept telling me that pregnancy is the hardest part because it's not knowing what you are facing.... They were so right! The second I saw Carson I knew that everything was fine.... in my heart everything was amazing! He was so perfect to me. All the worry and fear and hurt I faced after his diagnosis and through the remainder of my pregnancy was so useless. He was fine, and he was mine. :) Just after carson's diagnosis (I was 32 weeks pregnant which was a blessing in disguise) I met a gal who was 18 week's pregnant with her first son. She had been told that her son had spina bifida as well. She and I chatted on multiple occasions about the information we were receiving about our babies - the suspected diagnosis..... We were learning together....Well the weeks passed... I had Carson and had not been on the support group for a week or so and had not heard anything from her. I was so excited to chat with her and share with her about Carson. All about how she need not worry and that everything was going to be fine. I had learned that her son's diagnosis of Sacral level was really good, better than Carson's which is L1- L2. I could not wait to show her his pictures and encourage her. Carson was perfect and I was certain that she would be so excited to know her son would be the same.... I sent her a message so full of happiness and joy, a few pictures, and a big cheery "DON'T WORRY" She sent me a simple response of... "Don't want to talk about it... the baby's gone." I sent a few more messages to inquire further... got a few short responses. I finally put two and two together and realized she aborted the baby at the counsel of her doctor and husband. My heart is so broken for her... and for that precious little boy. This I'm afraid is a common thing. With some research I am concluding  that approximately 30% of babies in the U.S. and 90% of babies in other countries diagnosed with spina bifida are terminated. Heartbreaking.

I am burdened.... I am sure that if people were given accurate information and hear about or meet someone with spina bifida these numbers would drop significantly and we could save these babies lives.


You know someone with spina bifida- you love someone with spina bifida. And they are awesome. 

Spina Bifida sweet hearts


  1. Heartbreaking.... and yet as a person the call list when the diagnosis is made in my county, I hear this story over and over.... it is so wrong!

    Thanks for speaking out!

  2. That just breaks my heart. And makes me so angry at the medical professionals who are passing on their beleifs to scared moms and dads.
    I tried to find statistics about abortions of children with spina bifida. Unfortunately 30% doesn't surprise me.
    When my sister found out about Nickolas she talked about everything at work, and how good things are going. Her boss shared that she had an abortion because of spina bifida and was just totally clueless about what it really was.
    Like I said, it breaks my heart. But sharing our stories and showing off our kids and getting the word out. And looking at all of these kids being showcased becuase it is October! I know that we are creating waves, and we are touching lives.
    And look at that cutie!!!