Ashley's Story

Nov.18, 1998 -June 12, 1999


I was born on Nov. 18 1998 at 7:00 p.m.
My mommy and daddy were so happy to see me.
Unfortunately, I was having trouble
breathing through my nose.
A pediatrician that was there when I was born
discovered that I had choanal atresia.
It's when your nose bone isn't open.
I had only got a glimpse of my mommy
when I was hurried to a hospital in Birmingham.
A neonatologist called my mommy when
I got there and told her
some scary things about me.
Luckily, he was wrong about most of it.
He told my mommy that he thought I had DiGeorge Syndrome.
However, I tested negitive for DiGeorge.




When I was just a couple of days old,
I had my first surgery.
A very nice doctor opened my nose bone up and put
stints in the holes so they wouldn't go back together.
Around this time, the neonatologists discovered
I had 2 major heart defects.
When my mommy heard this, she cried so much
that her eyes swelled shut.
My heart doctor, Dr Johnson, told my parents that
my lung arteries were way too small
and my oxygenated and deoxygenated blood cells were mixing which is not good.
Also, I wasn't taking a bottle real well.
My daddy kept trying to tell the nurses that I was choking on the milk.
A few months later an upper G I was done and the doctors discovered that the milk was going into my lungs and I was choking on it.
I had to have a g-tube put in as a result.

 

Anyway, I was eventually diagnosed as having CHARGE association.
This is a very rare birth defect that only one in a million babies are born with.
Before it was all said and done,
I had to have 2 heart caths, 2 nose surgeries,
another to help my reflux into my lungs, a liver biopsy,
and several transfusions.
I also took part in an experimental procedure that saved my life.
I was a pro. I never fussed much.
I was a good baby. I was on continuous feed but if they
ever stopped my feedings, boy,
I'd let them have it.

 


My last hospital I was in only about a month.
I had to be on the ventilator because my lungs were underdeveloped.
On June 12, 1999, God told me I could come home.
I was so happy because I was having such a hard time.
I was always hurting and I hated being on a ventilator.
So about 1:00 a.m. the doctors called my mommy and daddy and
told them they'd better come to the hospital.
By the time they got there, I had already gone to Heaven.

 



Now I'm an Angel and I get to watch over my mommy and daddy all the time.
I know they miss me and I miss them too but we know we will be together someday.
Sometimes I visit my mommy and daddy through dreams or sometimes I send
them signs so they know I'm still around. My favorite sign is to swing on the swing set -
especially on days when there's no wind - that's how they know it's me.
 




P. S. Please donate blood at your local blood bank. 
I had a rare blood type and my life was saved several times
through the kindness of strangers who donated blood for me.
Please help save a baby's life and donate blood!