meet Mary Roskind

Trisomy 18

19th December 1995 ~ 28th June 1996

"If I had words, to make a day for you,
I'd sing you a morning golden and true.
I would make this day last for all time
And fill the night deep in moonshine."

(from "Babe")

and her family

Mommy

Donal Lauderdale

Daddy

Frank Roskind

Liam Busey

My Big Brother

Deirdre Busey ("Didi")

My Big Sister

Cathleen Roskind

My Other Big Sister

David Lloyd Roskind

My Middle Brother

Patrick ("Paddy") Roskind

My Brother (just a little bit older than me)

This is Mary's Story

My name is Mary.

I'm a little saint in heaven right now watching over
you. Feel free to talk to me at any time. Lots of people do. I'm going
to tell you my story.

Mommy was concerned about me when I was an "inside baby" before any of
the doctors were. All of my brothers and sisters were big babies and it
seemed like I was big too --- but the doctors had a really hard time
hearing my heartbeat.

Mommy had a sonogram at 23 weeks and it looked like I was only 21 weeks
along (Mommy KNEW that wasn't true) and was swimming in a lot of
amniotic fluid that shouldn't have been there. Now the doctors believed
that I had a problem too.

The doctors looked at me very carefully under ultrasound and found that
I had choroid plexus cysts (benign brain abnormality) and a double
outlet right ventricle (not so benign heart defect). They couldn't see
my stomach, so they also suspected that I had esophageal atresia -- it
turned out they were right.

Because my esophagus and trachea didn't separate properly during my
early development, there was no link between my mouth and my tummy. This
caused my amniotic fluid to increase and increase and increase. This is
called polyhydramnios. When I was only 28 weeks gestation, mommy was
measuring term. I was little anyway, most of us trisomy babies are
fairy-like, and we really didn't want me to be out on my own in the cold
world that early. So began the fight to keep me inside mom until 40
weeks.

Mommy went on bedrest (couch rest actually) and prayed a lot. The
doctors stopped measuring mommy when my anmiotic swimming pool and I
topped 50 cm. They said we were off the charts and measurements were
meaningless. Mommy was big enough for triplets, but at 40 weeks exactly,
the doctor delivered 4 lbs. 5 ozs of me riding, as it were, on the crest
Niagara Falls!

The first problem we had to deal with was my esophageal atresia and
tracheoesophageal fistula (a connection between my lungs and lower
esophagus -- not good!). I had a J-tube (later changed to a G-tube)
surgically placed when I was one day old. We decided to have surgery to
fix my tracheoesophageal defects, but the surgeon wanted me to get
bigger first. Then I started having seizures, and things looked grim for
me.

We got the seizures under control with medication, I gained weight and
when I was exactly one month old, I had the passageway between my
stomach and lungs closed and a little operation to cause my upper
esophagus to drain through a little hole in my neck. This was a great
relief to me since I had had a suction tube stuck down my throat since
birth to prevent my saliva from flowing into my lungs. Remember, my
esophagus ended in a blind pouch and anything I swallowed just
accumulated there.

I came home. I loved being home. My crib was in the dining room and I
was always in the center of everything. Everything was soft and
beautiful around me. I ate mommy's breast milk through my G-tube and
sucked on pacifiers dipped in sugar water. Life was good when I was
home.

I got fat. I learned to suck my fists. I cooed. I batted at my toys. I
learned to lift my chest off the ground for a few seconds when placed on
my tummy.

When I was 12 pounds, my parents and the doctors decided it was time to
fix my heart problem. I had surgery that seemed to be successful. Three
days post-op, the doctors were just about to take me off the ventilator
and all the PICU monitors and move me to "step-down" -- the usual
cardiology ward. They were removing my pulmonary artery catheter when
"something" happened. We don't know what. God simply decided that it was
time for me to go. The doctors tried so hard to keep me, but it wasn't
to be.

My body is resting now, next to my grandmamma whose name I share. The
time I spent in the world was a golden time. God gave me the gift to
touch people. No one who came in contact with me will ever be the same.

Love and peace,
Mary

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