Monday, May 13, 2013

The Half Empty Glass

My dad says my blog is depressing.
"Blogs are nice to read when they're happy but you write these sad stories with 'Pray for Baby Hadley' and then at the end you find out she's already dead."

My thought is, Well that's how the story ended...

The reality is, not all spina bifida stories end well. Based on several different (inconclusive) *studies:
  • Somewhere around 50% of fetuses diagnosed with spina bifida are aborted. 
  • Less than 5% succumb to spina bifida before birth and are stillborn. 
  • An estimated 25% of the people suffering from spina bifida die before their early adult years.

Early death is not a subject I tend to mention when discussing Evan's health but with the recent passing of my Grandpa Packard it's something that has been on my mind. It's one of many topics in the spina bifida network that I feel like people should know about. Then as I write I realize I have several contradicting opinions about the subject and no cohesive point to make. Even as I write this I don't know what I'm trying to say.

Is it that I'm worried about Evan dying early?
Is it that we're so blessed with modern medicine so Evan has a better chance of living long?
Is it that Evan seems so strong and normal I can't imagine him dying?
Is it that I'm in denial about the fact that Evan could die any day from spina bifida complications?

I don't know.

I think I just want people to be more aware of other people. I don't know everything about everyone--I don't even know everything about spina bifida--but I do know some things about this one condition and I want to share our story with as many people as I can.

One mother found out, at 20 weeks gestation, her daughter had spina bifida. The Harvard M.D.'s treating her said her daughter would be on life support and have too much fluid in her brain so the mother chose to abort the child. Now she sees so many miracle stories and wonders if she made the wrong decision. Now that she's more educated she says she wants to share her story. "If I can stop one termination it'll be worth it."
This makes me LIVID towards those doctors. Many many doctors are clueless regarding spina bifida and scare parents away from the  opportunity to raise these beautiful children. Awareness, people. Awareness.

Spina bifida can be life-threateningly scary, yes. Many children die too early because of complications from spina bifida. But people with spina bifida can also live happy, competent lives well into their 50's and 60's. Just be aware.

*Treatment has vastly improved since some of these studies and there is no definitive recent study regarding the life expectancy of people with spina bifida.

1 comment:

  1. Jenna, You are so awesome at sharing your feelings. It is so neat that modern technology is improving children's lives with spina-bifda. That is wonderful you are sharing information with others. Evan is so lucky to have you as his mother. I am glad you are enjoying today. The truth is none of us know what tomorrow will bring. Thank you for your sweet example.