Authors Note: This is a reflective
piece on the most significant part of my life. It is a glimpse into the
emotions and lessons that came with having my son prematurely and with a
life threatening heart defect. To complicate the situation even more all
this was happening while my husband was deployed to Iraq as a US Marine. The
experience was incredibly life changing. I hope all who read it, be it someone
also facing the daunting task of having a child with special needs or just
someone looking for a glimpse into this amazing journey, enjoy it.
So Much
More Than a Diagnosis
I pull in the driveway of my sister in-laws, house
and take a deep breath wiping away the tears that streak my face. All I have to
do is get through the phone call that only an hour before had me excited and
happier than I could ever remember feeling, but now just made me feel unbelievable
sadness. It is the call where I get to tell my deployed husband whether our
first child will be a boy or girl. The phone rings, and I know who it is
without even looking. I take another deep breath, plaster a smile on my face,
and answer the call. "It's a boy! And I don't want you to worry or
anything, because it's probably nothing, but they want me to go in for another
ultrasound to take a closer look at his heart." I didn't know it then but
my life both ended and began with that simple phone call.
My husband and I continued to talk excitedly about
his hopes and dreams for what we now knew would be a beautiful baby boy. A
little boy, exactly what he had secretly been hoping for he tells me. A son he
could play catch with, teach to hunt and fish and especially teach about
Alabama football! Although a daughter would have also brought him great joy he
admitted that he always pictured his first being a boy. The line crackled
and an automated voice came on telling us we only had a minute left to talk. A
minute left to say I love you, for me to tell him how much I missed him and to
tell him to be safe. Only a minute more, I had to keep myself from falling
apart, keep my voice joyous and upbeat. The minute passes and the line goes
dead.
As the call ends, I slowly sink to the floor. Deep
chest heaving sobs wrack my body. There is something deathly wrong with my
baby! In that moment of pure devastation I had never felt more scared and alone
in my life. How could this be happening to me, and even worse to my baby? How
could my baby boy's heart be broken? How was I going to tell my husband in that
next phone call that the boy he was so excited about just days before may not
even live, and if he did would have to fight for his life from the moment he is
born?
From the moment I received the devastating news
about my expectant son’s heart my life quickly became a whirlwind of
appointments and questions. Did I want a test done to check for genetic issues
that are associated with heart defects? Did my husband and I want to
consider terminating the pregnancy because of the medical complications? Where
and when would I move to a location that could support my son’s medical
complexities? I thought I would be the one that would need answers from the
doctors but instead I was peppered with questions from the people I trusted my
care too, making me feel like I had somehow caused this horror to happen. Did I
smoke or drink while pregnant? Did I take any drugs, prescribed or not. Did I
eat raw fish? Did I take my prenatal vitamins like I was supposed to?
Being my first child I thought I had done
everything right. I read all the books on what to do and not do while pregnant.
I followed all the rules, and yet I still felt that somehow my body had failed,
that I as a woman had failed my child. I somehow botched the very first test
when it came to motherhood, producing a healthy child. I felt a slew of
emotions from intense sadness, and guilt, to burning anger. I had friends that
smoked while pregnant or ate and drank without a care in the world, and still
managed to have healthy perfect children.
Decisions were quickly made to leave my in-laws and
move home to California where there were doctors and hospitals available to
care for my son and I, before and after pregnancy. Even with the comforts
of home, the assurance that my son would receive the proper care he required,
and information and statistics pouring in from all sides I still felt
incredibly alone. The words of encouragement and comfort meant next to nothing.
The “everything will be ok” I received from family and friends just hurt
because even though they meant well they didn’t know it would be ok. To top off
my pity party the one person that I felt could honestly make me feel better was
deployed thousands of miles away and in danger of his own. He couldn’t be there
for me, because it was my responsibility as a Marine wife to be there for him.
12 weeks later and six weeks too early my son came
into the world by emergency C-section. He was completely blue, non-responsive
and had to be resuscitated immediately after being pulled from the womb. It was
12 whole hours before I was allowed to see him, and it would have been longer
had I not put up a fight the second they woke me up. Being wheeled into the
Neonatal Intensive Care Unit filled with tiny babies, and not knowing which one
was mine had to be one of the worst experiences I ever had as a new mother.
They stopped me beside a tiny little thing that appeared to be more wires and
tubes than baby.
He was so tiny, his face hidden with the giant tube
forced in his mouth, and down his windpipe keeping him alive. His immature eyes
were covered by a mask leaving just the top of his head visible, the rest of
his body was taken up with stickers attached to wires, measuring his heart
rate, breathing rate, and temperature. There were tubes in place through what
should have been his bellybutton that provided nutrition, another to easily
access blood to check for infections, and to measure the oxygen content, making
sure all levels stayed delicately balanced. He did not move as he was sedated
to keep him comfortable. The only indication that he was even a baby boy were
the blue colored restraints along his arms to keep him from pulling or tangling
all the tubes and wires. Nothing could have prepared me for the devastating
image I was presented with in place of how I pictured my newborn son should
look. I was dropped into a world that didn’t make sense. Monitors beeping and
humming with important information about my child that I struggled to
understand. Surrounded by people, I felt entirely alone without my husband and
other half, for support.
I reached out but did not touch. My shaking hand
hovered there wondering if there was any safe place to touch my tiny baby boy.
One of the nurses, seeing my tears and lost expression, grabbed both of my
hands, and gently placed one on the top of his head with one on his knees that
were drawn up to his chest and said, “Here you can touch him like this, but
don't rub or move your hands too much or it will over stimulate him.” It was an
incredibly overwhelming experience to feel such complete happiness, love, fear,
and sadness all in that single moment. I could have stood there for hours
just watching his tiny chest rise and fall, but the sharp pain of my recent
surgery brought me back to reality, and all too soon I had to leave him there
alone.
Double outlet right ventricle Tetralogy of Fallot
with pulmonary stenosis, was the final diagnosis my son received shortly after
birth. Five completely separate defects within his heart working together to
keep my son very sick, and fighting to live. For a while his medical
diagnosis became who he was and how he was described. Instead of being known as
the baby with amazing blue eyes or cute curly hair, he was just the little boy
with Tetralogy. Four years, thousands of tears, hundreds of doctor
appointments, seven surgeries, and a fully corrected heart later I can't
believe how far we have come from that first overwhelming day. I'm amazed at how
much my son has accomplished not, with his diagnosis and prognosis, but in
spite of it. He is so much more than a diagnosis, so much more than a child
with special needs, so much more than I could have ever hoped for.
I went on to have another completely healthy baby
girl 20 months later, going a long way in healing the hurt and fear left from
my son’s ordeal. The birth of a child, especially the birth of my first child,
is enough to change anyone's life. But the birth of my medically complex child
changed me so drastically that the person I had become was hardly recognizable
by me, my family and even my closest friends. I look in the mirror now and see
a woman that pulled herself together even when her entire world was falling
down around her. I see a woman who has a deep sense of compassion and
understanding for other parents just learning to navigate through the world of
special needs. I see a woman with more patience and one who celebrates even the
smallest accomplishments of her children, a woman that knows that every day
truly is a gift. This woman may have worry lines and even a few gray hairs at
only twenty four, but she wouldn't trade them for the world. Those rough edges
mean she faced tragedy and grew from it, where she could have just as easily
been broken by it.
I have watched my son fight to live, learn how to
eat, walk and talk. Every day is still a constant struggle to gain weight and
to catch up to his peers. He has been through more in his short life than my
entire family combined, and yet you will never see him without a smile on his
face. His broken heart that once caused so much pain, fear and sadness is now
the most beautiful gift I have ever received and I wouldn't trade it for
anything. The experiences he gave me helped me grow into a person I can be
proud of.
He taught me that a person can be so much more than
a diagnosis, their label or even what the brightest minds expect. Because
of him I have grown from an everyday young military wife and stay at home mom,
into a woman that is not scared to work her butt off for what she wants even if
the going is slow and the doubts are high. I now understand that those baby
steps that seem so small and insignificant at the time really do add up and
before you know it the goal once thought impossible and so far out of reach has
been met and even surpassed. His strength and determination has inspired me to
go back to school and get that degree I never thought was possible while
raising a family with such high demands. My experience with his special heart
has pushed me into the career I am currently pursuing, of being a cardiac
ultrasound technician. He gifted me the opportunity to be there the day a
family finds out their baby’s heart is broken and the beautiful opportunity to
tell them it’s going to be ok, that their precious baby is so much more than a
diagnosis.
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