Our unexpected journey in the heartland

My life was forever changed on Dec. 6, 2010. This was my D-Day; the day I learned my daughter would be born with several severe heart defects. In that moment, it felt like the earth had stopped spinning. Even after eight years, I can still recall my exact emotions through these moments with sharp accuracy. I don’t know how to best describe all of these emotions together, but I can at least say it felt like I was free falling. I couldn’t feel my stomach. I was light-headed. It was like experiencing a theme park ride that I didn’t ask to be on, a ride I didn’t even realize I was on until it was approaching the big drop. It was a free fall with no foreseeable finish. 

Pregnancy was the most difficult part of this journey for me. All of a sudden, I was pushed into a realm completely unfamiliar to me. Who in the world knew that a child could be born with half of a heart? I certainly didn’t, and I certainly never expected for this to happen to my daughter. 

During my initial appointments, it felt like the list of problems was never-ending. The medical team could see that Madison only had a single ventricle, and she also had dextrocardia, a rare congenital condition in which the apex of her heart is located on the right side of her body. Madison also had issues with her heart-to-lung connections, which was later diagnosed as pulmonary atresia and LPA stenosis, and she had extra fluid on her brain. I simply couldn’t process all of the things that were being thrown at us. 

When you first enter “the heartland,” it’s simply terrifying! You have to learn an entire new language that becomes a part of your daily life, and all of a sudden you’re going from picking out nursery décor to choosing cardiovascular surgeons for your child.

Then, your heart warrior arrives, and it’s time to fight. 

Madison was born on May 2, 2011. She was beautiful, strong and perfect in every single way, including her perfectly imperfect heart. I could tell she was a fighter from the get-go. I knew that Madison simply had no choice but to fight. So, you know what? I didn’t have a choice, either. I refused to become too scared or overwhelmed. She was fighting every single day, and I knew from the day she was born that I would be right next to her, fighting each and every step of the way. 

Here’s the thing – we, as parents and caregivers, can’t change what our warriors are faced with. However, we can fiercely advocate on their behalf. We can learn. We can push for the best and brightest possibilities. We can pave the way for research and medical advancement. We can create hope for our children and all of our heart families. 

I quickly learned through my research that choosing Texas Children’s Heart Center was my top priority. Parents often don’t realize they have a choice when it comes to where their children will receive care. I’m here to tell you that you do. I’m a resident of Austin, Texas, and I’m so grateful to have such a distinguished heart center merely three hours away from us, even though I would gladly travel for hundreds of hours if it meant Madison was receiving the best care. 

I knew we were exactly where I needed to be as soon as I walked through the doors at Texas Children’s, when I was 22 weeks pregnant. Carmen Watrin, my fetal coordinator, was part of my first initial moments at Texas Children’s, and I consider her a pure angel in my life to this day. I honestly don’t know how I would’ve made it through my pregnancy without her. She not only helped me navigate the Texas Children’s health system, but also helped me build my heart “legs” that I needed to stand for Madison. 

We started to realize Madison was doing very little by the book, what I like to now call “true Madison-style.” It seemed as if she was throwing curveballs every chance she got, but we thankfully had a medical team jam-packed with talented, intelligent individuals who, most importantly, had gigantic hearts of their own. 

There was a time when I was afraid to think of the simplest of milestones, simply out of fear that I’d never get to experience them with Madison. Yet, here we are, approaching Madison’s 7^th birthday following three heart surgeries and four heart catheters. 

I initially worried that Madison would live a life filled with pain, and my greatest prayer was for her to experience joy. I can say now with full confidence that Madison has so far lived a life full of joy. She might have only half a heart, but she’s absolutely filled brimming with spirit, love, happiness and maybe a little too much spunk!

I’m so thankful for each and every person at Texas Children’s who helped us get Madison to where she is today. I’m beyond grateful for the expert teams of physicians, surgeons and nurses, to name a few, who guided Madison’s care, especially during the rough patches. Dr. Fraser, Dr. Justino, Dr. Ermis, Princy, Nancy, Colleen, Ann … the list goes on and on, and I feel like you’re part of our family. I’ll never be able to adequately express my gratitude for what these people have done for Madison. 

When faced with challenges, you always have a choice. You can live in anger or fear, or you can choose hope. You can choose to recognize that each and every little moment is a miracle in and of itself. 

I never expected to be on this journey, but here we are. During our now eight-year stay in heartland, I’ve met some of the most amazing people, from medical professionals to patient parents to other heart warriors. My heart family is one of the most unexpected, wonderful gifts I’ve received in my life. 

I’ve experienced grief, and I’ve experienced fear, but I’ve also experienced and lived through the miraculous moments that overcome the worst of emotions. 

Madison, alongside all of her heart brothers and sisters, is my hero. Texas Children’s Heart Center – thank you. Thank you for giving my heroes longer lives with better quality. Thank you for giving us hope. 

When I recognized the immense value of my heart family, I was prompted, along with four other patient mothers, to begin the TCH Heart Families Facebook group. Veronica, one of the aforementioned mothers, acted on an amazing vision of community support, where we were all connected by our treatment and medical journeys at Texas Children’s. I’m so thankful she has allowed me to co-lead such an amazing community of heart warriors. If you’re part of a heart family at Texas Children’s, we would love for you to join us. Request to join!