Mending Broken Hearts

Posted by on Jul 19, 2013 in Community, events | 0 comments

I’m honored to introduce our very first guest blogger. Joye Mullis is the mother of Ethan, a 4-year-old who is kicking heart disease to the curb. Her family’s story is so inspiring, I couldn’t do it justice by writing about it myself. The Mullis family’s adventure is one of sadness, strength, and hope. Especially hope, because joining the RiC heartwalk team is one small way to offer support to those affected by heart disease everywhere.

 

Quick! What’s the most common birth defect? 

Cleft lip? No.  Down Syndrome? Nope.   Spina Bifida? Not quite.

 

The Centers for Disease Control and Prevention (CDC) names Congenital Heart Defects (CHD) THE most common type of birth defect in America.

 

Are you surprised?

 

In the United States alone, nearly 40,000 infants are born with a heart defect each year.  This equates to about 1 in every 100 births, or around 110 babies born each day with tiny, broken hearts.  Of those 40,000 infants, thousands won’t celebrate their 1st birthday and thousands more won’t reach adulthood.  More than half of the babies who do survive will require at least one invasive surgery in their lifetime, and we’re not talking some laparoscopic procedure.  Full blown open-heart surgery is required to repair many of these defects, and sometimes as soon as one day of life.

 

The facts are sobering, no doubt, but there is hope.

 

The Children’s Heart Foundation reports that, in the last decade, death rates for CHDs have declined by almost 30% due to discoveries made through research.  Thanks to these advancements, there are an estimated TWO MILLION survivors of Congenital Heart Defects in the United States! And, get this – more than half of those survivors are now adults.  That’s over one million men and women beating the odds and paving the way for our children!

 

Wait.  Did she just say “our”?

 

You see, along with those 40,000 infants born each year come 40,000 moms and dads.  We have sat beside numerous hospital beds begging our babies and our children to hang onto life.  We have fought to teach our children to eat, walk, and talk and we’ve cried tears of joy when they do.  I have personally handed my child over to a team of surgeons, and then watched his infant heart beat from inside his opened chest after their work was done.  My son is one in one hundred.

 

"110 babies born each day with tiny, broken hearts"

“110 babies born each day with tiny, broken hearts”

Ethan, my firstborn, found his way into my arms on the morning of March 8th, 2009 before the sun had a chance to rise.  He was the baby I so desperately wanted, the child I already loved, and no doctor in the hospital could convince me he wasn’t perfect – even though he’d been prenatally diagnosed with two birth defects which would require surgical intervention.  I remember crying over his bassinet in the newborn nursery, silently praying that he would be OK.

 

I had no idea what else was coming our way.

 

After spending a few hours with Ethan in our hospital room, the nurse took him to the nursery for some routine testing.  Based on the coloring of his skin, though, she decided to perform an extra test – a pulse oximetry screening – to check his oxygen levels.  What she discovered began a flurry of activity that led someone to our room to say,

 

“We have reason to believe there is also something wrong with your baby’s heart.”

 

My husband and I talked with a pediatric cardiologist who told us that Ethan was very sick and would need open-heart surgery sooner than later.  In short, our son was diagnosed with Pulmonary Atresia with VSD. This basically means there was no way for blood to get from his heart to his lungs (pulmonary atresia), and there was a large opening in the wall that should have separated his ventricles (ventricular septal defect – VSD).  I was angry and terrified all at once.

 

Ethan was rushed by the LifeFlight ambulance to Duke University Medical Center within hours after his diagnosis.  His first open-heart surgery took place on March 11th, 2009 at just three days old. It was a long, grueling operation, but the repair was a success.   Six days later, however, Ethan went back into the operating room to have a permanent pacemaker implanted.

 

He stayed at Duke for nine and half weeks, underwent four operations during that time, and also experienced full cardiac and pulmonary arrest.  It took eleven minutes of CPR to bring him back to us, but he fought hard and proved just how tough he is!

 

In his four short years of life, Ethan’s had a total of seventeen surgeries and procedures – seven of which have been heart-related.  Despite all of that, though, he is now a healthy, active four-year-old who loves bugs, cars, and super heroes.  He will face additional surgeries in the future, but we choose to enjoy and focus on who he is today.  The journey hasn’t always been easy, but it has taught us to seize every moment of un-promised life, and to love deeper than we ever thought possible – even when it hurts.

 

Especially when it hurts.

 

Given the prevalence of Congenital Heart Defects, it is likely that you know someone affected by them in some way.  Maybe even you are.  Or, maybe you’re like me and thought heart problems only happened to old people.  I was clueless before my son was born, which is why I’m so passionate about shedding light on this life-threatening birth defect now.

 

Since Ethan’s birth, our family has gotten heavily involved with the American Heart Association.  We have committed to helping Photo1them raise research dollars, and the annual Heart Walk is a wonderful, simple way to do so.  Please consider getting involved.  Join a Heart Walk team and begin your own fundraising efforts.  Do it in memory of the children who have lost their battle, and in honor of those who are still fighting.  Even the smallest act can send a loud message – let us know that we’re not facing this alone.

 

Maybe one day there will be a fix.  Maybe one day we’ll be able to spare our children from surgery after surgery.  Who knows? Maybe one day there will even be a cure.  Until then, I’ll be doing my part to raise research dollars for America’s most common birth defect.

 

Will you join me?

 

 

To read more about the Mullis family and their story, visit their blog.  Don’t forget to register for the Triangle Heart Walk here and search “Raleigh Is Cool” to find our team. See you September 22nd at PNC Arena!

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