I made these 'learning posts' in June for Spina Bifida Awareness month, but thought I'd make a stand-alone blog so that if anyone is interested, all of the information is here. And I can add as I learn more about spina bifida as well!

Spina Bifida is the most common birth defect in North America. My son Nickolas was born November 13, 2009 with spina bifida and I have chronicalled our journey here, in my personal blog.

I hope you enjoy and learn something!

The information from this blog has been collected by myself to share what I have learned. It should in no way replace medical recommendations or consultation. This is for educational and information purposes only.

Start by picking a topic below:

Wednesday, August 12, 2009

My first blog... ever!
I decided to start this blog to keep everyone up to date on what is going on with our expanding family. I've also found it helpful to read about other blogs of people who are experiencing the same thing we are.

Yes the spina bifida family blog.

Kyle, and I (and Katheryn) are expecting a son (and brother) in November. We found out about 3 weeks ago that our Nickolas will be born with spina bifida, a myelominengecele, the bad one. The worst day of my life, our baby boy has a congenital, non-treatable, disabilitating problem. We were told (at 21 weeks) that in Ontario we have until 24 weeks to terminate. What?! This is the baby that I can feel moving all the time! What are we looking at here.

A little bit about spina bifida first - when the baby is forming, the spine did not close all the way, this means that there is a space in the spine in which the spinal cord comes out (the lesion) and forms a pocket in the back. The nerves are damaged from this point and below, the lower the lesion the better the outcome.
Nickolas' lesion is in the lower lumbar/upper sacrum area - its not the worst, its not the best area to have a problem. Hopefully we are looking at needing braces/crutches to walk. But we won't know for sure until he is born.
We talked with a neonatal neurosurgeon at Sick Kids, a pediatric rehab doctor at Bloorview who runs the spina bifida clinic. We had an MRI, a level II ultrasound and an amniocentesis. Pretty much all the tests/visits we were offered. I'm posting the picture of the MRI and you can see where the lesion is - the white part by the bum (its supposed to be all black).

Otherwise we are hoping for a happy normal baby who will be born with a physical disability. And yes there will be other difficulties and health problems, but this is our SON. We wouldn't ask for this, but he is here, he is ours, and we can work through this.

I think this is it for now. I'll keep you posted as things are developing

1 comment:

  1. Hi Amanda, Kyle & Katheryn:

    What a nice idea to set up a blog...so much easier to keep everyone informed. Getting the information first-hand is so important. Kudos to you both for turning a difficult decision into what might be a positive outcome. I truly commend you! Luv, Cousin Sue