Dear Jimmy Kimmel, Welcome to The Heart Club

This morning my inbox was inundated with messages mentioning Jimmy Kimmel.  Odd, I thought to myself as I wiped the sleep from my eyes and brushed my teeth, and began preparing my two boys for yet another Tuesday in 2nd and 4th grade.  Sure, I watch the Jimmy Kimmel show on occasion but I’ll be honest: I’m usually in bed by the time it comes on.  So after the kids were off to school, I poured myself another cup of coffee and sat to watch the thirteen minute clip of the Jimmy Kimmel show that had been sent to me by half a dozen people.

In this clip, Jimmy announces that his newborn son Billy was born with one of the severe Congenital Heart Defects: Tetralogy of Fallot. As I watched, my coffee grew cold and my chest began to tighten.  I couldn’t help but weep as his poignant, heartfelt words brought back memories of my own son in the fight for his life as his body learned to cope with his own severe Congenital Heart Defect: Truncus Arteriosus.

Jimmy Kimmel and family,

First, congratulations on the new (and adorable!) addition to your family. Billy is just precious and I am so happy to hear that he is now at home recovering from his first open heart surgery.  I’d also like to thank you for opening up so candidly, for bringing attention to the very real threat to healthcare in America and to offer you the shoulder of a parent that knows exactly the feelings you so eloquently described.

There are no words to adequately convey just how exhilarating it is to experience the birth of a child.  Alternatively, there are no words to adequately convey just how terrifying it is to watch as that happiness begins to crumble around you.  To watch as the room fills with more and more nurses and doctors and how the world falls out from under you when they bring in the specialists and explain what must be done to save your son’s life.  How the minutes crawl by so slowly as you wait in the operating waiting room for updates from the surgeons. The knowing that your son’s heart has been stopped, only in hopes of starting it again, and stronger this time. There is also no way to express the fear knowing that your family will have to endure this experience time and time again.

And you are so right, Jimmy.  Like Billy, my son was also not diagnosed until after birth.  Like you, we thought we would be bringing home a perfect and healthy baby boy (which, of course, we eventually did).  My son Caden underwent two open heart surgeries during his first six months of life – just as your son will as well. Caden had his third open heart surgery in August of 2015 and he may need even more open heart surgeries as he outgrows the “part” (a manufactured pulmonary artery) they placed in his heart – as your son will require procedures as he grows as well.

I’d also like to thank you for bringing national attention to the terrifying decision that many parents, myself included, are faced with each and every day.  You see, my son was born in 2006, before the rule of pre-existing conditions was eliminated by the Affordable Care Act.  We, as middle class Americans, were billed over $2M for his surgeries and treatments during his first six months of life alone. His lifetime insurance cap was $5M and he had almost met half of that cap before he even met his first birthday. IF he would meet his first birthday. We are lucky in that we did have insurance, but I shudder to think what we could have faced had we not. I try not to think of what my son could have faced because of something completely out of his control. His very life on the line, over and over again as we do the only thing we know to do.

Thank you Jimmy Kimmel, for bringing attention to the world of Congenital Heart Defects.  I am so saddened to welcome you to the “heart club” but please know that this heart community you joined last week consists of some of the most caring, compassionate and loving individuals I have ever met. While no one wants to be part of this “club”, please take comfort in knowing that you are not alone; that you are surrounded by parents that know exactly how you feel. Thank you for thanking each and every one of the nurses and doctors that helped to save your son’s life.  Even ten years later I remember all of the nurses and doctors that helped care for Caden. The gratitude to healthcare providers that simply cannot be described. Thank you.

Sincerely,

Ashlea Konecny, a fellow heart parent.

More resources for heart families:

Caden’s Feet: Walking the Path of Congenital Heart Defect {CHD Parent}
Your Child’s First Cardiology Appointment (What to Take, What to Expect)
What is a Congenital Heart Defect? Statistics You Need To Know From a CHD Mom
A Letter to My Heart Child on His Birthday
Living With CHD: Learning Barriers for Children with Congenital Heart Defects
Warning Signs of Heart Failure in Children
Reasons The Ronald McDonald House Is More Than Just a Room