Kennedy’s Heart :: Our Journey with a Ventricular Septal Defect

Four months ago, our tiny miracle arrived, Kennedy, seemingly perfect in every way. Pregnancy had been a breeze, the ultrasounds flawless, and the initial newborn checks all clear. But life, as it often does, had other plans.

Fast forward five days and our first pediatrician visit arrived. (Side note: that was so nerve-wracking as a first-time mom. No one ever warned me about that. They warned me about so many things but never that feeling of having to leave the house with a new baby.)

However, the appointment seemed routine, mundane in fact. Until I heard the words “heart murmur.”

The pediatrician assured me that it was probably just a harmless heart murmur and said we should just monitor it. Now, being the laid-back mom that I am, I shrugged it off initially. My husband and I talked about it in the car and said, “Ehh . . . It’s probably nothing.”

Yet, when we returned for her two-week check-up and that pesky murmur was still there, a knot of worry formed in the pit of my stomach. This time our pediatrician said we would need to schedule an echocardiogram to look more closely at what’s going on. An echocardiogram–that’s a new word forever etched into my vocabulary.

After a few echos and a few more doctor appointments, we finally met with the cardiologist. He told us that Kennedy had not one, but two small holes in her heart. One being a supracristal Ventricular Septal Defect. Basically a fancy word for a hole in her heart in a scary spot.

As the doctor explained the gravity of her condition, my heart shattered into a million pieces. I broke down in that doctor’s office that day.

He was explaining that she would need surgery, and I asked, “It’s not open heart surgery right? Just a . . . ” Before I could even finish my thought, I could tell his answer was going to be something I didn’t want to hear. He said, “Yes, open heart surgery.” Meaning they would stop her heart and use a machine to breathe for her while repairing her tiny heart. Oh, and we would have to travel to either Stanford or Seattle. I looked over at my husband, and we both knew in that moment that we had to be strong and this was going to be a long road.

The doctor’s words echoed, “I’ll give you guys a few months to process everything.” Process? How could we possibly absorb the gravity of this situation? We walked out of that appointment, Kennedy in our arms, the weight of the world pressed down on our shoulders, tears in our eyes, and silent screams trapped in the back of our throats.

So, here we are waiting for that next appointment. Every day when I look at her, I see strength in her fists and the fight in her eyes. This journey may not be exactly what we expected, but Kennedy’s got this. We’ve got this.

So, yes, there are tears. There’s worry. But there’s also a fierce mom and dad, a village of support cheering us on, and most importantly, the belief that this little girl will conquer anything life throws her way.

Stay tuned because this adventure is far from over.

The opinions expressed in this post are those of the author. They do not necessarily reflect the official policy or position of Boise Mom, its executive team, other contributors to the site, its sponsors or partners, or any organizations the aforementioned might be affiliated with.