What does congenital heart disease mean to you?

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 5^th 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!