Welcome to our little space on the net! This blog is just about our family life, and began as a way to keep family and friends updated on what was going on with my pregnancy with our first son, Gage. We've since added Evie to our family, and I continue to blog about family life, car seats, spina bifida, and anything else that catches my attention.

The Kids

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Saturday, October 1, 2011

October is Spina Bifida Awareness Month!!

You really need to check out this blog this month.  Gage will be featured there at some point.(Edit- here is his feature!)  Cassie does a really great job featuring kids in her "Faces of Spina Bifida" entries every day of October.

So, in honor of Spina Bifida Awareness month, I thought I'd write a bit about spina bifida, and a bit about Gage and his journey.  This is basic info.  If you want to know more about Gage, you can scroll back through the blog archives.  I usually kept up pretty well with the big stuff like surgeries and big milestones.

Spina bifida is a neural tube defect that occurs at about 4 weeks gestation (2 weeks after fertilization, so generally, before Mom even knows she's pregnant). It occurs when the neural tube, which becomes the brain and spinal cord, fails to close fully.

Spina bifida is the most common permanently disabling birth defect in the US. It occurs in 7 in 10,000 live births. It's unknown how many pregnancies are affected due to miscarriage and voluntary termination.

There are 3 types of spina bifida:
spina bifida occulta. I've read that up to 20% of the general population could have this, and many will never know. It's when the skin is closed over the defect. There is only a cleft in the bone, and the spinal cord and meninges (covering) are not protruding. Generally, people with SBO are minimally affected. I actually know a girl who found out she had SBO during a visit to the chiro's office. She's in her 20s.

meningocele- this is where the covering of the spinal cord, or meninges, protrude through the bone opening, creating a cyst. This can usually be corrected surgically and does not affect the person. This is a very rare type of SB.

- when you hear someone say spina bifida, this is the type they are talking about. Both the meninges and nerves of the spinal cord are affected. Since nerves are involved, there is loss of function to the organs or muscles that those nerves control. There may be an opening in the skin over the defect, or it may be covered with skin. This is what Gage has.

So, Gage has myelomeningocele. He had and open defect when he was born, that I never saw, but Tony did. He said it was tear-drop shaped and 2 or 3 inches across and the widest point. He is affected at about L4. His calf muscles don't work at all, and the other muscles of his legs and feet are weaker than they should be. He does not have urinary or bowel control.

It's a little unusual that we don't have to cath Gage for him to urinate, but he doesn't have reflux into his kidneys, so we don't. At some point, to be determined by his social awareness, he will have to have surgery to allow him to stay dry, and for bowel continence. This part is by far the most difficult for us. The physical limitations are something I can deal with pretty easily, but the social aspect of bowel and bladder control is difficult for me.

Gage also has a shunt that drains fluid from his brain into the space in his abdomen. The excess fluid on his brain is actually the reason he was born when he was. I found out about Gage's diagnosis when I was about 19 weeks pregnant, and saw a perinatologist from that point on. They monitored the size of the ventricles of his brain, and therefore the fluid levels on his brain from that time on as well. He was on the high side of normal until my 37 week appointment, when the fluid levels suddenly doubled. I had him at 37 weeks, 6 days. I attempted to have him naturally, but he just wasn't ready, so after 12 hours, I had a C-section. I got to see him before they took him to Arkansas Childrens, where he had his first surgery to close his back at about 12 hours old.

Gage's shunt malfunctioned when he was 2 months old, due to an infection that had probably been present since the first shunt placement at 1 week old. That required 3 surgeries and a 2 week hospital stay, but he still has the same shunt now, and hopefully will keep it for a long time yet.

Gage has had some complications and surgeries that have set him back a bit. He had a Chiari II malformation that was decompressed, and a cluster of cysts that had to be removed twice. Every kiddo with spina bifida has a Chiari malformation, but some are never symptomatic. Looking back, Gage's probably wasn't, but at the time, we weren't sure if his sympotoms were caused by the cysts or the pressure caused by the Chiari.

Gage wears braces on both legs to compensate for the muscles that don't work. He had a little better control prior to his last cyst issue and surgery, and that function did not come back. He is more affected on the right, and he crouches more on that side. His right leg is also shorter and his foot is noticeably smaller. Still, he walks without any other assistive equipment and should continue into adulthood baring any further complications.

Gage is smart. I think most of the time, when people hear about any disability, they immediately go to mental retardation. Gage doesn't seem to have any learning disabilities thus far and his ability to recall names and facts astounds me.

Gage is also very very social. He's never met a stranger. I think this will play to his benefit as he gets older and starts to notice that he's different.  I anticipate him being very matter-of-fact about his disability and just telling people about it.

Now, the best part- pictures:
in the NICU

My little fatty

Sitting with Katie
Halloween with his tank walker at age 2
on the caboose last fall

at the creek with Evie

riding the train at the zoo

playing at the park


Carrie H. said...

Jessica, I would absolutely love to meet your sweet Gage some day! I love that you are educating people about what his disability is and, more importanty, what it isn't!

AJ said...

The most precious young man with two wonderful parents! Love you - More, AJ

Jamie said...

That halloween costume is amazing! Great job! your little boy is so adorable, and the funny thing is, I was just saying I need to write a post just like this... great minds think alike :)

Lucky Gem said...

What a wonderful blog entry! Thanks for sharing!! I admit, I didn't really fully understand spina bifida before.

Gen Bowlin said...

Thank you for posting such an informative blog. I am learning.

Melisa said...

I love reading through your blog! Gage is so cute and doing great! Some of the things you talked about reminded me of Grayson and I would love to chat with you more about your experiences. Can I email you? My email is melisa307@yahoo.com =)

Rebekah said...

So wonderful to see baby Gage growing up into such a handsome, little boy. Thank you for sharing your journey and raising awareness.

bolubeyi said...

I and my daughter suffers from spina bifida. We are living in Turkey.
We also have problems in orthopedic and urologic.
I wish you all heathful. We also have a forum on our website.