What does congenital heart disease mean to you?
If it doesn’t mean anything to you yet, then allow me to
share with you what it means to me and how that came to be. I hope that through sharing, CHD will mean
something to you after all. I pray that
it is only through me and my precious boy that CHD means something to you and
not through personal experience.
A little over a year ago, CHD (congenital heart disease or
congenital heart defect – they are defined the same), meant nothing to me. If I had heard it, I could have put two and
two together. Congenital – present at
birth, heart disease or defect – something wrong with the heart. Got it.
Someone born with something wrong with their heart. I had no idea that “someone” would have a
precious face and a name I would know well.
That “someone” would be my son.
Little did I know that the “something” would also have names and
intricate details beautiful and terrifying in their own imperfection. I was completely unaware that CHD would shape
me and my entire family and change the way we viewed not just our newest family
member, but everything about our lives.
About one in one-hundred babies are born in this country
with CHD each year. It is the number one
birth defect in the United States. CHDs
are the most common cause of infant death due to birth defect in our country
and more children lose their lives to CHD than all forms of childhood cancer
combined.
Before I learned these facts, back when I knew nothing about
CHDs, I was like most other expectant moms.
I was excited. I was bonding with
my baby, even thought I didn’t even know he was a he. Even though he was teeny tiny and looked more
like a tadpole than a baby, I loved him.
I prayed for his health and dreamed of his sweet face. I wondered if he would be a boy or a girl,
what he would look like, and what his sweet cry would sound like.
At 20 weeks, I had a routine “anatomy” scan. Being that this wasn’t my first pregnancy, I
knew what to expect. The ultrasound went
well, but I did notice the large amount of time spent on our little guy’s
chest. They couldn’t get some pictures,
so we scheduled another ultrasound to see if they could get what they
needed. A series of ultrasounds and
visits followed, the first of these was our second anatomy scan and when I
knew, in my heart, that something was wrong with our baby’s heart. At the final of these, we were told with no
frills that our baby’s heart had not developed properly. Two holes, parts too small, other parts too
large. It sounded like an overwhelming
mess. Our hearts were broken.
I went from dreaming about what our baby would look like, to
“seeing” and knowing well what every inch of him looked like. Weeks followed with doctor appointment after doctor
appointment. Ultrasound and
echocardiograms were routine. I saw my
sweet baby in 3D more times than I can count, but what his face looked like
mattered less and what his heart looked like mattered more. Today, I know exactly what Ty’s heart looks
like inside and out. I have poured over images
of his heart from that early 20 week ultrasound until, well, now – we still
look at it at regular visits to our cardiologist. I have “watched” on echo the blood flow
through his heart, the direction of flow.
I have examined the four chambers. I have stared for a great number of hours at
screens showing my sweet boy’s heart. I
have watched it on monitors. I have
watched it change as he has gone through surgeries and been treated with
different medications. I have seen it
enlarge, I have seen it work way too hard, and I have seen in stretch and
adjust to new plumbing to allow the sides of his heart to become more
proportional.
Tonight I held my sleeping 9 month old baby and placed my
hand over a scar that is fading and a raised bump on his sternum and I felt his
slow steady breathing and beating heart.
It was a far cry from the rapid borderline hyperventilation of his past
and his heart had a strong, steady, and reliable beat.
Ty’s heart will always be flawed and show the signs of being
taken apart and stitched back together twice.
His heart has been rebuilt into a working muscle that can support life. He will always be a heart warrior. A fighter.
He is at increased risk for a handful of issues and will see a
cardiologist regularly for his whole life.
He may always be on medication – he started IV medications moments after
birth and has never been free from taking medication of some sort. Leaky valves, turbulent flow, and regurgitation
will always be part of his heart’s vocabulary.
I’ll never be able to say he has a healthy heart.
I can, however, say, he has a beautiful heart that was
pieced together through two flawless surgeries.
I can say that he has handsome scars – probably 15 or so, from his
months in the hospital. Two open heart
surgeries, a heart cath, chest tubes, pacing wires, and countless pic lines
have scared his chest, abdomen, ankles, and thighs – some very small, and one
very large scar. He and his heart will
always be a work of art, seen and loved by many.
If I had to name one thing that has surprised me more than
anything about CHD, it is that I can’t imagine my life without it. As strange as it sounds (and it was journey
to get to this point), I am thankful for CHD.
In a perfect world, Ty would have been born with a flawless heart. In a perfect world, CHD would not exist. This would be wonderful, but this world is
far from perfect and CHD is a reality that many families face. I am thankful because the Lord chose Chris
and I to parent a handsome heart warrior.
I am thankful because CHD has changed us for the better. I am thankful because CHD has brought wonderful
people into our lives. I am thankful,
because, although Ty’s heart isn’t flawless, it was perfectly designed by God
and given to us to love. I am thankful
because with the help of God and His blessing of an incredible medical team, Ty
is winning his fight against CHD.
I don’t love CHD. I
am just thankful.
So, what does Congenital Heart Disease mean to me? It means Tyson. It means beautiful hands of talented surgeons. It means the warm smile of our cardiologist
and everyone on the 5th floor at VCH. It means teamwork. It means family. It means warriors and heros and precious
angles that get called home before us.
It means fight. It means
survive. It means love.
February is Heart Disease Awareness month. I plan to do several posts through February,
so stay tuned and get your red ready to wear!
Also, please mark your calendar for the CHD walk in
Nashville (details below)! It is a FREE
event. Please stay tuned for details on
how to join our team and come walk with us!
About the Congenital Heart Walk
Event
Name: 2016 Nashville Congenital
Heart Walk
When: Saturday, June 4, 2016
Where: Edwin Warner Park, 50 Vaughn Rd. , Nashville
TN 37221
Time: Registration begins at 9:00 AM
Walk kicks off at 10:00 AM
What: Offering a family friendly 1 mile route!
