Getting the news...

When I was 20 weeks pregnant, my doctor called and said there was a problem with my blood work. My heart sank! My AFP levels were off the charts and I had a 1:4 chance of my son having Spina Bifida. I would have to see a specialist for a Level 2 u/s. The u/s confirmed our worst fears. Our son had Spina Bifida myleomeningocyle. Good news...it was low. The dr. thought it was S2-S5 and he didn't have hydrocephalus in utero. Bad news...his back was open with a large protruding sac filled with spinal fluid. He would need surgery 24 hours after birth to close his back and I would need a c-section at 38 weeks.

We went home that day and started our research. And boy! Is the internet and Google cruel to SB! Most of what we read was not true! Thankfully I found a community of SB moms on babycenter.com and they were a great resource! Also, I searched high and low for blogs of moms of SB kids so I could read and see pictures of their kids (a couple of my favorites were "Our Little Gibblet" and "Tear and Mend"). This was so helpful in showing me that SB kids ARE normal and healthy! I loved seeing kids and how happy they were. This was so reassuring to me. I also reached out to these moms through email and got lots of reassurance and help from them. You can ask SB moms anything and they are happy to help you and answer any of your questions!!

One of the things I read about was the lemon sign on the u/s. One of the things the dr. will look for in the level 2 u/s is at the head to see if it has a "lemon" shape. Yes, I did think my son would be born with a head shaped like a lemon...but NO he wasn't! Here is a picture of it in the u/s:

And this is a picture of him at birth...see his head is perfectly normally shaped =)

The dr. also took LOTS of pictures of his spine...but we couldn't tell anything from them. I also opted to have an amnio done to make sure there weren't any other problems with our little man. The amnio came back clean and the procedure was pretty simple. I felt no pain and I loved seeing my little man's spunk in the u/s during the amnio. He kept swiping at the needle like he was saying "Get that thing out of here! I'm perfectly fine!!"

Also, when I was pregnant and even after Grayson was born, I spent hours scouring online looking for anything that could tell me about which vertebrae corresponds with what nerves...and what muscles the nerves controlled. I could never really find anything that could explain this clearly to me. A little while ago I found this blog and it has a wonderful explanation of levels, lesions, nerves and Spina Bifida in general.

http://aboutspinabifida.blogspot.com/2012/06/lesions-levels-sensory-and-mobility.html?spref=fb