Kelly DiMaggio is 28 years old with a complex single ventricle physiology consisting of mitral atresia, d-TGA with pulmonary stenosis and a hypoplastic left ventricle. Kelly lives outside of Washington, D.C., with her husband, Michael. She graduated from Dickinson College in 2011 and is now employed full time as a Registered Client Service Associate for a team of financial advisors. She loves reading and writing, the beach, marine biology and travel (her passion).
There are times, especially during Congenital Heart Defect
Awareness Week, where I really can’t believe how much I’ve gone through, how hard I’ve fought, and how dire times once were. I was born in November of 1988 and it wasn’t until minutes after my birth that doctors realized something was terribly wrong. My shell-shocked parents were soon after told that I had Hypoplastic Left Heart Syndrome (HLHS) along with a myriad of other complications. In the simplest, albeit most dramatic sounding terms, I was born with essentially only a half functioning heart. I was baptized and given my last rites and an estimated 24 hours to live. Yet here I am. 28 years old and thriving! Happily married for the past three years, working full time, and making the most of each and every day. As we all know, there’s often the misconception that after corrective heart surgeries, the child is cured. That is far from the truth, over the past few years I’ve been dealing with a brand new reality of health implications and working on continually successfully navigating what my health throws my way. But I know for most heart warriors, especially those with HLHS, the doctors and parents put all their energy and focus into getting the child through one milestone at a time. My mom always reflects back that everyone just wanted to get me through kindergarten, and then through elementary school, middle school, and so on and so forth. As someone who’s made it through to young adulthood, and is doing extremely well, here are a few of my word of wisdom for you. Take them as you may!
First, and most importantly, I’d urge you to treat your heart warrior as normally as possible! My parents made it a point to never treat me any differently, as they didn’t want to turn me into what they coined a “cardiac cripple”. In fact, if anything, they inspired me to reach my fullest potential. To hit milestones that when I was born, many didn't think I would make. They encourage me to travel. To see the world. To pursue my passions. To love and respect myself and to have the power to conquer whatever comes my way. To handle the trials and tribulations with courage and poise. I am forever grateful for how they raised me. While CHD and HLHS is an important part of my identity, it’s the furthest thing from my full identity.
I pride myself on living a normal life; completely surprising people when they find out I have a complex medical condition. I went away for my full 4 years of college, even spending one semester on South Caicos, a small remote island in the Turks and Caicos island chain, doing marine research. I am fully employed and developing a successful career in the financial field and have been happily married to my husband for just over three years. I want to assure you that down the line, you will most likely be welcoming another person into the emotional journey that is your child’s health. Trust me when I say that the person who comes into their life as their significant other is like no one you will have ever met. He or she will be loving beyond belief and will care for your child in ways that will exceed your wildest expectations. Trust your children as they grow up and teach them to love fiercely and fully.
Teach your child to love their bodies, to love their scars. Instill in them the notion that their scars are beauty, their scars show they survived. Always make them the center of their medical appointments; never forget that in the end, no matter how little they are, this is their body. It is important for them to be involved. Teach them to understand their condition, to trust their instincts, and to know their limitations. Teach them to advocate for themselves. Teach them to grow up strong and fierce and ready to take on the world. Know that your CHD child is stronger than you have can ever imagine. Know that our biggest fear isn’t for ourselves, but rather at seeing our loved ones worry or upset. We want you to live your lives to the fullest, too!
Be prepared to help them transition into the realities of adulthood. Understand and respect their frustrations when they reach the age where they start becoming responsible for their insurance bills and get extremely overwhelmed. Be sure to show your support of mental health awareness and treatment if necessary. Raise your child to know that there is no shame in asking for help or for broadening the number of resources they make available to themselves. Above all, celebrate your heart warrior each and every day: for all they were, for all they are, and for all they will become. Happy CHD Awareness Week, everyone!