My daughter had dilated cardiomyopathy
By: Whitney Ortiz
Everything started when I put our 3 month-old twins down for a nap. After a few minutes, I saw Eliana’s chest heaving. I rushed over and found her largely unresponsive.
When we got to the emergency room, we learned her heart was only vibrating. The doctors didn’t know if she’d make it across town from the hospital where she was to one that had more life-saving machines.
Sitting in that ambulance, praying Eli would survive, not fully comprehending what was happening, and watching people going about their daily lives…It was a disembodying experience.
Over the years that followed, Eli was diagnosed with dilated cardiomyopathy, which meant her heart was enlarged and not pumping sufficient blood to meet her body’s needs. She had three open-heart surgeries, including one to attach a Berlin Heart, a ventricular assist device, and one to receive a heart transplant. She also had dozens of cardiac catheterizations, was on dozens of medicines, and had dozens of hospitalizations of up to 8 months at a time.
When I sat on her hospital bed about 5 years ago, I received an insight to write. To write down all the knowledge I had from our family’s experience of Eli’s health journey to help others with a whole health, integrative, and integrated approach to care for each member of the family and for the family unit as a whole.
I didn’t know in that moment that Eli was going to soon pass away.
Eli passed on March 28, 2016. Her light continues to shine and will always guide us. I carry it with me when I support families through the non-profit, Eliana’s Light, that I co-created in 2017 with Eli in her loving memory. I believe she’s with me every step of the way.
Through Eliana’s Light, hundreds of volunteers and dozens of partner organizations and specialists collaboratively support the quality of life of families that include children who have medical complexity. We operate with a C.A.R.E. model that includes connecting directly with families; advocating for whole health, integrative and integrated approaches to care; raising awareness on integrative health practices that can support each family member; and exchanging information and resources through community.
In recognition of the many women professionals who are especially stretched and stressed as a result of COVID-19, I launched Whole Health Self-Care in June of 2020. Whole Health Self-Care is a platform through which women around the world access stress relief, self-empowerment, and well-being coaching and mentorship; self-care packages; and access to additional experience through the “Whole Health Series”. The “Series” consists of online forums and podcasts.
I reflect often on the meaning of life’s occurrences, and how I am to carry forth my life’s experience to be in service to others with love. Love is at the heart of everything, literally and figuratively. When a moment is challenging, I think, “What would love do?”
In this light, I move forward, knowing we are all connected and our bonds are eternal.