In memory of Shane Torrence (1/28/93 - 9/11/99)
A mom on a mission raising awareness of the condition that took my only child at age 6 and a half - Congenital Diaphragmatic Hernia CDH takes the lives of 15,000 children every year and harms 15,000 more.
Will you care?

Wednesday, April 2, 2014

Shane's Story - Chapter 1

For CDH Awareness Month I've decided that I will share Shane's story through photos every day.  Or will try to.  Hard to wrap it all up in 30 nice neat little packages.

This is me at my baby shower, about 2 weeks before Shane was born back home in Virginia.  That's his dad.  No, I don't know what's up with that beard.  We were young, stupid, in love, newlyweds of a year and a half and not even old enough to buy beer yet.   It was 23 years ago - not uncommon to marry young then.  I don't recommend it.   Shane came along before I started college... UNC Chapel Hill med school was my goal.   Ironic that we would eventually end up there with Shane.  These pictures are bad but they are all I have.   Maternity photos were not in back then.

I was determined to have a healthy baby.  I read all the books.  I ate well except for constantly craving dill pickles and orange sherbet (not at the same time).   I wouldn't use the microwave or the remote control I was so paranoid.  No smoking, drinking, drugs (except for prescription antibiotics for that infection).  We lived in the middle of farm community, I might have been exposed to pesticides.  I don't know.  Not that that's proven to cause CDH.   My point is... I wasn't doing anything at all to "deserve" a sick baby (like any baby deserves to be sick).

I had a good pregnancy overall with no real morning sickness, just a bladder infection the first trimester and bleeding.  A threatened miscarriage that scared the heck out of us for a few days but he held on.  I had had 2 very early miscarriages before this pregnancy and didn't want to go through that again.  After the bleeding stopped and we got a heartbeat on ultrasound, things seemed ok.

The 3rd trimester I was hospitalized for dehydration and what we thought was the flu.   I had severe, undiagnosed polyhydramnios (too much amniotic fluid, indicating a problem with the baby). 

I had 2 ultrasounds, one at 7.5 months.   The doctor wrote down on my records (that I requested later) on the ultrasound check list "Cannot find stomach".  They never told me this, never did another test, never sent me to a specialist.  Nothing.  They diagnosed nothing.

This was before we had ever heard of "Congenital Diaphragmatic Hernia". 

I dreamt every single night that something was wrong with my son.  I knew he was a boy even though we didn't want to know the gender.  I dreamed that he was born, turned blue, didn't cry, the doctors grabbed him and took him off to another room and I was left alone on the delivery table screaming "Where is my son?!  What is wrong with my son?!" and woke up crying every single morning.

I told this to my OB multiple times and was dismissed as a "nervous first-timer".

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