October is Spina Bifida Awareness Month...

[therock1811]

http://www.sbaa.org/

October is Spina Bifida Awareness Month. This website can explain the effects and preventions of this birth defect. Make a donation, participate in an event, or just do the basic research. As long as we can get the word out, we can help find a cure for this.

For those unaware, I was born with this, so this is a cause near and dear to me. I know, better than many here I'm guessing, what this is and how to deal with it. Please read the info at the link above, and if you have questions, feel free to contact me.

[streetsoldier]

So finally they have a month devoted to my spine? It's about time...too late, but better late than never.

[rainstorm]

lets pray more progress is made

[Skywatch_NC]

When I was employed at a gift wrap and shopping bag plant in lower NY state
in the 1980s I worked with a friend named Don (who also has spina bifida) in the maintenance machine shop...as part of my job was sweeping the shop floor towards the end of my shift each day. Don and his wife now live in western NC.

Jeremy, Don and others with diffabilities are truly an inspiration!

Eric

[petal*pusher]

Thank you for posting this info!

My first-born.....a beautiful little red-haired boy was born Oct. 5th, 1975. Except for carrying him a whole EXTRA month, the pregnancy was uneventful. My little Steven had Spina Bifida.....also Hydrocephalus, which often accompanies this birth defect. The intense labor lasted Friday, Sat., and into Sunday afternoon.....two doctors finally cut him out of me after realizing they were loosing us both. As he was taken from my body, I noticed his entire back was open.....and he didn't make a sound.

One Dr. yelled "Oh my God, I've never seen anything like this!".....the other, "Get the lab up here immedietely!" One of the 3 nurses in attendence quickly laid her face down against mine and gently covered my ears.....I could feel her hot tears joining mine as they rolled down my cheeks. After a very long time, I could hear my baby make tiny little peeping sounds as they gently worked on him across the room.

My husband and parents were anxiously pacing in the waiting room; Mom said she first heard running steps, then carefully paced steps when the nurse pushed the incubator across near them.....then running steps again. The compassionate and careful treatment given to us by that hospital staff has never been forgotten. My little Steven lived almost 3 hours. I did get to see him, but, back then, holding a dying baby was not favored.

A few months later, I became very involved with the March of Dimes....and continue even now. By some wonderful miracle, the same 3 nurses were there when I delivered my daughter in '78, and my son in '82! They all remain friends.

Haven't talked about this in many years.....thank you for listening....p

[therock1811]

Thanks for sharing your story petal. I can understand how much it took for you to share that with all of us. It just underscores how important this cause really should be.

[Miss Mary]

Thank you for this very important topic/reminder Jeremy. I know this is a cause very near and dear to your heart. You are an inspiration to all of us, you just keep going and going. I know your struggle isn't an easy one and fraught with trials (your upcoming surgery), but please know that we care about you here at S2K.

Petal - your story just broke my heart. I am so very sorry for you and your family. You've never shared that before until now and I know that took a lot of you to do so. Like Jeremy, this is a worthy cause to your family as well, but at a sad price too.

My own cause is of course as you know, Colon Cancer. March is this specific type cancer's awareness month I believe. While I've not done much to get the word out, I have reminded friends and family as they turn 50, they now need a colonoscopy. Or if I hear they had a close relative with CC, I remind them to get one. I've personally been able to get about 10 people in for colonsocopies. I have one remaining friend who continues to postpone scheduling one. I tell him I won't give up, I will keep politely reminding him to call his doctor, maybe I need to stop being polite.

Thanks again for this topic Jeremy.

mary

[therock1811]

Thank you for this very important topic/reminder Jeremy. I know this is a cause very near and dear to your heart. You are an inspiration to all of us, you just keep going and going. I know your struggle isn't an easy one and fraught with trials (your upcoming surgery), but please know that we care about you here at S2K.

Yes, it's very important to me. Which is why I was up at 8am Saturday morning for a walk-a-thon benefiting the Spina Bifida Association of Cincinnati. We had a few hundred people there, all walking for a great cause. An estimate of how much was raised will be available later this year we think.

[Kim_in_MN]

Petal: thank you for sharing that. My heart goes out to anyone that has lost a child.

Kim

[Stellar Storm]

Just wanted you to know I read this great post. Thanks for sharing your stories! I linked to http://www.sbaa.org and I have learned a lot today.

[therock1811]

Figured I would bump this for this year's observance, especially for those who aren't aware of it.

[petal*pusher]

Bless your heart rock......you must have known I needed a few positive vibes! It was 31 years ago tomorrow that I lost my little guy. Life has many lessons....and sometimes we question the way we are meant to learn them....but we have to believe there are reasons for things happening.

Thank you for the reminder my friend!......p

[therock1811]

As long as you believe that there's some reason behind the things that happen, that's when you truly begin to understand who's in control here. As an example, 6 years and 3 days ago, I was fighting for my life in a Cincinnati hospital, near death after my bladder ruptured. The lesson learned there? Life is precious, don't take a SECOND for granted, you may not have another. And the little lives we bring into this world are all the more precious...short that they can be sometimes. In closing, as I prepare to go study God's word, I want to leave you with this thought: God knew the days that you would have. Don't take any of them for granted.

[O Town]

I agree 100% Jeremy.
I am sorry to hear about your son Petal, I can't imagine how that must have felt. Medical science has come so far in the past few decades. I have seen on t.v. where doctors are now performing surgery on the baby while still in utero to close the spine of infants with spina bifida. It is shown if it is closed at this early stage they are less likely to have any of the other symtoms like fluid build up and the need for a shunt. It was truley amazing to watch them perform the surgery. Maybe this surgery can be used more regularly if spina bifida is found early in pregnancy to correct the problem before the child is born. I am sure when my children are have babies it will not be that big of a deal to do in utero surgery on infants.

[therock1811]

Yes indeed there have been advances made. We still haven't gotten rid of it, though. Here's some statistics from the Spina Bifida Association of America:

• Spina Bifida occurs in 7 out of every 10,000 live births in the United States.
• Right now, at least 70,000 people in this country have Spina Bifida. (That's an estimate, there may be many more)
• The average total lifetime cost to society for each infant born with Spina Bifida is approximately $532,000 per child. (based on the value of the dollar in the 1980's)
• Estimated total annual medical care and surgical costs for persons with Spina Bifida in the United States exceed $200 million.(again, based on 1980's dollar)

These are staggering numbers. We're talking lots of money being spent by and for these 70k+ people with Spina Bifida. You see why this is so important? By research, the surgery that was mentioned, and overall prevention, we may be able to help those who already have it a lot better than before!