Our journey started sixteen years ago when our daughter, Olivia, came into this world. Prior to her birth we were unaware that anything was wrong. It wasn’t until 24 hours after when she was diagnosed with Hypoplastic Left Heart Syndrome. HLHS is a life-threatening condition, which requires open-heart surgery within days of birth, and even after surgery, it continues to be a highly complex and serious disorder. Since Olivia is a young woman, we feel that it is important for her to share her own story instead of us.
My name is Olivia and my diagnosis is Hypoplastic Left Heart Syndrome (HLHS). Throughout my life, I have undergone three open-heart surgeries needed for staged reconstruction as well as a multitude of laparoscopic procedures. I have had all of my open-heart surgeries before the age of four, therefore I remember little of those experiences. Even so, I can recall special moments that have shaped my childhood and evoke nostalgia instead of fear whenever I enter a doctor’s office or the hospital. I remember playing in the hospital activity room with my new friends Sophia, Lauren, and Riley; who were also CHD patients at the Children’s Hospital of Philadelphia. The time I got to go through the “secret passageways” (hospital hallways) with my dad in my little red wagon. When the music therapist came to the CICU and worked with me to create a song about my cats. These are the memories that remind me of the good I made from the bad, but most importantly, I do not remember the pain I felt, just the bliss. I wish I could have felt that way forever.
My doctors have never set any limitations for me, but I have learned to set my own. The key to living and thriving with HLHS is to listen to your body and to be aware of its limitations. As I got older, I realized that there will always be struggles, like having to step back from seemingly ordinary daily tasks, but I never let them discourage me. Without the guidance of my parents and my extraordinary doctors and nurses, I would not be the same person I am today, nor would I have been blessed with the same opportunities.
Ever since I was young, my parents informed me about my condition in an age-appropriate manner. It was never a big sit-down conversation, but when I had a question, they would answer honestly. They were always careful about how they explained it to me and made sure that I was able to properly comprehend it. Being trusted to learn about my condition has helped me gain more independence and monitor my own health.
A few years ago, I was diagnosed with hepatic fibrosis as well as other comorbidities of HLHS. That diagnosis was hard for me to comprehend. I was overwhelmed, so much so that I did not ask questions to help me understand my diagnosis. Instead, I turned to Google for answers, where the large majority of sources are irreputable, include false information, and are unspecific to my individual case. I began to fear the next steps in my medical journey. I became afraid of sleeping as I had the irrational thought that if I fell asleep, I would not wake up. I did not want to eat since I thought that my eating habits were causing my liver complications. In fact, the false information I gathered from my internet searches led me to believe that my aspirin was causing my hepatic fibrosis, so I even stopped taking my daily medication. After my diagnosis was clarified by my doctors, I quickly got back on track and began to live my life as I did before my diagnosis.
It is a blessing to be able to share my story. Some days can be harder than others, more energy consuming and mentally draining. It is important to have the support and encouragement from loved ones that it will get better. I still have my days when I do not feel well or feel defeated, but I keep fighting because after all, I am a CHD Warrior. So, if you are a fellow CHD Warrior reading this, I want to reassure you regardless of the challenges that you are facing, keep trekking forward and not only will you be stronger, but you will enjoy and appreciate everything that life has to offer. And if you are a parent or guardian, never give up hope that your miraculous CHD Warrior will flourish and be successful.
