Tuesday, February 2, 2016

Omphalocele Awareness Day 2016

Sorry, I'm a little late in posting.  O Awareness Day is Jan. 31st each year.  Its amazing to see a showcase of these babies.  Even remembering the ones that have passed.  In the MOO group, we get to know each other, whether through the multitude of questions posted or being located physically near another MOO (moms of omphaloceles).

This past year, several states have had the day legally recognized by the state government as Omphalocele Awareness Day.  Definitely on our way to be nationally recognized!

Awareness?  Yes, we need to let each mom that gets the diagnosis know that it is not a reason to terminate the pregnancy.  They will have struggles.   It will be hard.  Its heartbreaking.   The baby may make it or not make it.  In the words of my own OB/GYN, "it may or may not be compatible with life."  I'd say in MOST cases, the baby will be ok.  Or at least in my experience (despite what the statistics may say).  But you have hope, you have the MOO group there for you to answer your questions that most doctors can't, and you have an increase in modern medicine and technology on your side.

We've seen articles where the CDC says cases of omphaloceles and gastrochisis are increasing.  I might agree with that.  In the 4 years that I've been a part of the world-wide MOO group, membership has gone from around 400 to thousands!  Granted, some of those are GOO's (grandmothers or grandfathers of omphaloceles), DOO's (dads of omphaloceles), etc.   Most of us do NOT agree that so called "risk factors" are true.  There are SO many of us that had none of these existing factors to cause such a defect.  Personally, I don't smoke, I'm not obese, I don't do drugs, I wasn't taking any medications, and I'm not African-American.

It was just God's will.  Why you ask?  No, I don't think God is cruel, but He does allow trials and tribulations to test your faith.  John 16:33 says you have trouble in this world, but you will also find peace in Him.  I will go as far as to say, your family won't understand.  At times, your spouse/partner won't understand.  Your friends won't truly understand.  Who will you turn to?  God was my rock.

Merritt is a happy, healthy 3 1/2 year old who eats everything in sight.  Just the other night she put down 3 oysters, 2 shrimp, a salad, chicken, onions, mushrooms, grits, pasta, and milk.... at one meal! Yes, I wish my other kids would eat like she does!  I have no idea where she puts it, but food has never been her struggle since she was 2 weeks old.  She's odd for an O baby like that, but I know several other similar to her.  My point is that every O baby is different!  Some may have trouble with their lungs, their hearts, their stomachs, or have other genetic abnormalities.  In Merritt case, she has a VSD (hole) in her heart.  But it does NOT hold her back at all.

Merritt, we love you and thank God for you!  God is using you in great ways!  "Your people" love you!

Saw this on a new t-shirt the other day:  "Who needs bellybuttons anyway?  They just collect lent." :)

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1 comment:

MAK said...

She is SO precious!