By Kelly DiMaggio
19 Dec

The Unknown Decade

Wednesday, December 19, 2018

November 23 marked my 30th birthday! Yes, 30 is definitely a milestone for everyone, but for me it was extra monumental. When I was born my parents were told I had hypoplastic left heart syndrome (HLHS)—a CHD incompatible with life—and that I would die within my first 24 hours. Miraculously, I defied the odds and 30 years later here I am. I couldn't be more grateful.

The months leading up to my birthday ended up being a roller coaster of emotions, some of which ended up taking me by surprise. Initially, I was ecstatic and beyond excited. Against all odds, I had made it! I wanted to scream it out from the rooftops.

But as the days passed and the date drew nearer, I suddenly found myself wrestling with abject fear. Even though I knew November 23 would be just another day, and my health status wasn’t going to magically change overnight, I felt like I was entering into an ominous decade of all unknowns. I don't know the exact age of the oldest person living with HLHS without a transplant, but I believe it is in the upper 30s, perhaps even early 40s. I'm a person who puts a lot of importance on numbers and dates and I found myself freaking out about entering the age group of these HLHS survivors.

Cardiologists are not afraid to admit that since I am one of the "pioneers" of HLHS and complex CHDs, even they aren't sure what to expect down the line for me. Don't get me wrong, the advancements that have been made in medicine and technology are incredible and I'm confident that they will continue to profoundly impact the trajectory of CHD care in the future. Still, that doesn't necessarily make the here and now any less scary.

The first decade of my life was full of open heart surgeries, catheterizations and many other trials and tribulations. Decade two was pretty smooth sailing and I lived my life very similarly to every other kid. Decade three, I started to wrestle with some of the complications of my HLHS—primarily blood clots, atrial fibrillation, and overwhelming fatigue.

This past July, I wrestled with a particularly bad span of AFib and learned that a pacemaker might end up being in my future. And not only a pacemaker, but for me, it would have to be placed abdominally, which would entail open heart surgery. Although I am currently on medication that is working wonders at managing the AFib, that was still quite overwhelming.

After riding out all of these emotions, I ended up hitting 30 and feeling two main things: grateful and empowered. My husband threw me an absolutely incredible birthday party that all of our friends and family attended, including three of my best friends who traveled from all across the country. Looking around the room, there were people there from every stage of my life: my family, friends from elementary school, middle and high school, college, my post-graduate years and even good friends from work. There are no words that would appropriately articulate how overwhelmed with love and gratitude I was to be surrounded by such a wonderful support system.

I spent my actual birthday at the National Aquarium in Baltimore with my two roommates from my study abroad program in the Turks and Caicos Islands. When I was a junior in college, I spent three months doing marine biology on South Caicos, one of the island chain’s remote islands. This was one of the most empowering experiences I have ever had – as the water is one place where I truly don't feel my HLHS. In the water, I feel I can do anything. So to have these girls by my side, who I met on such an empowering experience, on my birthday was particularly profound.

Today, my husband and I head to Aruba to celebrate five years of marriage. We will also be away on December 22, which will mark the 1-year anniversary of a terrifying experience that led us to discover that my husband has his own CHD. It has been a crazy year for sure, but as we soak in the Caribbean Sea, I know we will be nothing but grateful and empowered.

Wishing each and every one of you in our incredible community health and happiness for the holidays and the coming New Year!


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