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This
was the first family photo that was shot of my family. Me, my wife
Tammy, our daughter Cadie, and our miracle baby Thomas David Moore HLHS
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Thomas David Moore and Hypoplastic Left Heart Syndrome (HLHS)
Loosing my Smile, my Mind, and Almost my children by David Moore
This story was wrote by David Moore in 2005. David and his wife have a son who was born with HLHS. This is his story:
My Struggle
My wife and I tried for 10 years to have children
with no luck. I was gone all the time due to my
job driving cross country and it just wasn't in
Gods plan yet. In July of 2003 my wife called me
on the way to meet my tee time and asked me if I
truly wanted to be a dad. Of course I thought she
might be pregnant but she told me a lady she works
with wanted to give her a baby. Her daughter was
raped at the age of 12 and couldn't raise the
child the way it needed to be raised. To make a
long story short my daughter was born in Oct of
2003. We met her when she was just 2 hours old and
fell in love with her right away. Everything was
going great we took her home from the hospital and
allowed visitation whenever we could. Our adoption
was finalized on Dec 15 of 2003 and it was one of
the best days of my life. 6 month to the day our
adoption was finalized on July 15 of 2004 we
received in the mail a summons by the state of
Indiana that we were being sued for the annulment
of the adoption. In other words the baby's mom
wanted her back and we were going to have to fight
for her. We were told from her attourney we didn't
let them see the baby and because we didn't keep
up with our part of the bargain they wanted her
back. This made no sense to us because we were in
communication with them and I have video of them
at my house seeing the baby. On my daughters 1st
birthday we found out that my wife was pregnant
and we announced it at her birthday part to the
family. We were still fighting for my daughter but
our life was great because we were expecting a
newborn.
On May 24, 2005 my son was
born it tied the happiest day of our lives because
we now had to babies to take care of. The first
day went on like it does with every newborn you
show him off to everyone and recover from the
stressful day of child birth. The 2nd day of my
sons life started like the first. We were excited
about being parents but by the afternoon things
started changing. The nurse wouldn't bring our son
to us because she noticed something with him and
she wanted a doctor to take a look at him. She
called a neonatologist who came in to check him
out and he called a cardiologist to come in also
because he didn't like what he saw. He called us
into the nursery and showed us an echo of our sons
heart. It was horrible news even more horrible
than being sued. He explained to us that my son
had one of the worst heart defects that a baby
could have. He has HLHS or Hypoplastic Left Heart Syndrome or in lamens terms the left side of his
heart didn't form and was either going to require
a series of 3 open heart surgeries or he would
die. I was in total shock and I couldn't even tell
my mom where I was at when she asked me. It was
horrible and if I had to describe the situation is
was liked someone dropped a car on me from a 12
story building. I couldn't breathe to cry.
I was transported to Kosair Childrens
Hospital that night and my wife had to stay at the
hospital where she delivered because she had a C
Section and couldn't walk. We got settled at
Kosair in the NICU and everyone kept telling us
the doctors where great and that they would take
care of my son. My wife was finally released to
come to the hospital just in time for her to learn
that my son was dying. It was May 31st and his
heart was failing. His heart had been racing
between 150 and 240 beats per minute for a week
and his heart was wearing out. They were probably
going to have to do emergency surgery on him but
they had to wait for the surgeon to get out of a
heart transplant surgery. We sat at his bedside
all day behind a white curtain with his
cardiologist and the nurses. This was the worst
day of my life. They put David on some medication
to help his function and he started to turn
around. He made it through the night and was
scheduled June 1st for his Norwood procedure. This
procedure reroutes the blood flow of his heart
completely. He was in surgery for about 6 hours
and then he was in recovery for an hour or 2. I
was utterly exhaused from no sleep and the stress
of everything. Remember we were still fighting for
my daughter and now we were possbly going to loose
our son.
That night was such a shock
to me because of what I saw. That morning when he
went in he looked like a baby but when he came out
of surgery and was put in PICU he looked like
something out of a horror film. I wish someone
would have warned me about what I was about to
see because when I went into the room he was lying
on a table with a hole and I mean a hole in his
chest. They couldn't close him up after surgery
because of swelling so he had a gortex patch over
his chest. with all kids of tubes coming out of
him. He had 18 different pumps and monitors hooked
to him with nurses and doctors coiming in and out
of the room all night. Little David was in the
hospital for a month before he got to come home. I
remember crying to my mom when I told her we were
coming home. I think everything just released from
me at that time because I was trying to be so
strong for my son and my family that I just
couldn't hold it back anymore. I couldn't stop
crying I cried until the tears quit coming which
was about a hour.
On August 2 on my
wedding anniversay we received a call from our
attourneys (we had 2) that we had one our case but
the other lawyer was going to file an appeal with
the supreme court of Indiana. Our attourney
basically we had won beause they usually wont
overturn a judges decision in an adoption case. We
were so relieved on one hand but was still nervous
on the other. In Oct of 2005 the court of appeals
threw the case out of court. We were so happy and
upset all at the same time. It cost us $30,000 to
keep a child that was rightfully ours to begin
with and should never even been put through it.
My wife asked me why I didn't seem
happy about the way things were going and I
couldn't tell her why. I was a happy go lucky kind
of guy and for some reason I couldn't smile
anymore. I could make a smile with my face but it
wasn't real. I wasn't happy with anything, my
life, my wife, my work, my family, anything. It
was depressed in a way but I don't really want to
call it that. We still had 2 more surgeries to go
through and I wasn't letting down my guard.
In May of 2006 my son had his Glenn
procedure - They connected his Pulmonary artery
with his SVC and he also had a 2nd surgery to give
him a pacemaker. His heart kept racing about 200
beats per minute so they had to give him
medication. The medication kept bringing his heart
rate to low so they had to give him a pacemaker to
keep his heart rate at 100. He was in the hospital
for another month. You can imagine the medical
bills, medicine prescriptions, and doctor visits.
We had spent with insurance over $2,000.000 on him
and we still have one more surgery to go through.
We went into the hospital again on July 5 to have
a heart cath. They were trying to find a way to
fix the irregular heart rhythum that he has and
while they were flushing his lines, at least this
is the only thing they can think of that could
have made this happen, he had a stoke on the right
side of his brain. He didn't know his mom or dad
and just calling out Momma Momma Momma over and
over and over. My wife was holding him but he
didn't know who she was. He couldn't raise his
left arm or his left side or even his left leg. We
thought he might be paralyzed on that side of his
body but time would tell. After a few worried
hours he started moving the left side. He had
tremors in his left arm but he didn't have much
control over the left side of his body. He has had
to learn how to walk, crawl, sit up, run, and
everything else he was doing before the stroke. He
is in rehab to help with strengthening and
conditioning and has done very well. We are still
awaiting Davids 3rd stage of his surgery called
the Fontane and he should be done unless later on
he needs another heart or has to have his
pacemaker replaced. It will be in the spring of
2008 around April or May.
When I Realized I Needed to Rally!
My wife kept telling me that I had become so
negative and I never smiled anymore. I was always
unhappy and things needed to change. I think I
just had so much built up in side of me that it
was blocking me from doing so.
What Worked For Me
I have been wanting to do something to help out
other people who were going through what we went
through or were going to go through. I created a
myspace page as a support group for others who
needed support plus friends and family could see
his pictures. I have been tallking to other
families who have went through some of the things
my wife and I went through. I also was looking for
hope for my son. I kept searching to find an older
child who had his defect. All I could find was 13
years of age and younger. One night I found Jeni Sorensen (now Jeni Busta), She is a 22 year old HLHS survivor with
a pacemaker and stroke survivor. She had just
gotten married and was on her honeymoon. I was so
excited I couldn't wait until my wife got home to
tell her. I believe even though I am a born again
Christian and there were so many prayers going out
to my family and son I just needed to see hope.
The hope of my son growing older and having a
family of his own. The hope that he could play
certain sports, ride bikes, rock climb,and do some
of the things a normal child, teenager, and adult
can do. I realized he wasn't helpless. Just since
I started the support group my wife has commented
to me several times that my smile has started to
come back. It is amazing what hope can do for you
along with a lot of prayer. God just had to open
my eyes and show me what I needed.
The Progress I've made
I keep living everyday with hope that my son will
live to be an old man and have children of his
own. I also live everyday with the thought that I
am the father to 2 of the most wonderful children
on this earth and I am so blessed that God chose
me to be their father. God will never give you
more than you can handle and you just have to have
hope. I keep hoping and praying everyday that I
don't loose my smile again. If I did I would
probably loose everything I worked so hard to
have. My life, my family, and my God.
David has set up a website and also raises money for Kosair Children's Hospital, Louisville, KyFor more information, please visit his website (Click on the logo below):