Ethan's Story: Surviving Against the Odds with Heterotaxy

My name is Alison Chandra. I live in Utah with my husband and two children, Zoe and Ethan. I’m here today to talk to you about how Medicaid has made it possible for my family to choose life, and to keep choosing life, every day. 

When I look at the Bible, the example of Jesus, His message is to love other people and care for the marginalized. To do whatever we can to make sure that everyone has what they need. My job as a person of faith, as an advocate, is to bring the Kingdom of God into reality. It sounds cheesy, but it’s really true! 

Because God’s not writing policy, it’s my job to advocate here on Earth. 

At 25 weeks, I learned that my baby had Heterotaxy, a disorder where organs are duplicated, missing, or in the wrong place. Ethan has five spleens, numerous heart defects, and two left lungs. His stomach is not where it’s supposed to be. As a pediatric ICU nurse hearing that diagnosis, my heart sank. I knew that the road ahead could be incredibly hard for him, and also expensive; he would go on to have four heart surgeries and counting.

It wasn’t until I entered a Medicaid office to ask for help that someone told me it would be okay. We could figure it out, we could do this. It took so much courage to walk in and sit at that desk, because I’d spent my whole life thinking that good people didn’t need Medicaid, that the whole system was filled with fraud and abuse and leeches on the state. That social worker changed our lives.

Because of Medicaid, I got prenatal care, and my son was born at the Children’s Hospital of Philadelphia, where he had his first heart surgery six days later. Because of Medicaid, Ethan got everything he needed to grow into the amazing kid he is today. And he is such a cool kid: So thoughtful and analytical. Ethan’s thriving in school with friends he adores, and he loves math and science, and has such a wild imagination. He’s always building things in Minecraft with his best friend, and he’s got Legos all over the living room right now. 

Because of Medicaid, our family went from worrying about how to put food on the table to being able to focus on what Ethan needed. Medicaid gave us support and stability at a time when we felt very alone and scared. We’re on private insurance now but I will be forever grateful for the breathing room and support Medicaid offered us. I want this for all kids, for every family. 

Ethan changed my perspective on what it means to be pro-life. I now understand that it means being pro-everyone: Pro-parent, pro-child, pro-disabled, pro-LGBQTIA. As a Heterotaxy advocate, I provide unwavering support for all of our families, no matter the choices they make, because I understand that life is more than a one-time thing to choose from, it’s a whole life, and people need information and support.

Ethan isn’t the only reason I know firsthand why Medicaid coverage is so important. As a private duty nurse, I provide critical care that keeps children at home, with their families, where they are safe and loved. These kids need one-on-one nursing care full-time, and without Medicaid paying for nurses like me, they would be institutionalized. It’s important to know that because long-term care facilities aren’t set up for children, many of these kiddos would be living in the hospital. Instead, one of my clients is able to be at school, making tons of friends, having a blast in a mainstream classroom where I take care of his medical needs so he can focus on being a kid. For another one of my clients, my respite care provides her family with essential support so they can keep her at home where she belongs. It’s such an honor and a privilege to provide this care, and I’m thankful every day that Medicaid covers it.

As someone who knows Medicaid from both sides of the bed, as a parent to a medically complex child and a nurse to many more, I know how important this program is. Medicaid saves lives. It provides families and kids with resources they need to thrive and lead the most fulfilling lives possible.