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This is But Why, a podcast for curious kids. I'm Jane Lindholm, and we make this show at Vermont Public Radio. In our last episode, we answered questions about hearts with pediatric cardiologist Dr. Jane Crossan. Her job is to help kids who have problems with their hearts get better. After that episode aired, we got a note from a kid who has a lot of experience with doctors like Dr. Crossan. I'm even in...
I'm three years old and I have heterodexy. Ethan Chandra lives in Middlesex, New Jersey with his mother and his father and his older sister Zoe, who's five. My brother's heart is very special because it wasn't pumping normally when he was born and
Now he has a special battery to help him. As Zoe just explained, Ethan's heart wasn't working quite right when he was born. You may not ever have heard the word Ethan said to describe his condition. I have heterotaxy. Heterotaxy. Hetero means different and taxi means order or arrangement.
Heterotaxy is when someone's organs aren't in the right place or lined up exactly the way they're supposed to be. Sometimes doctors know that a baby has heterotaxy before the baby is born, but sometimes it's not discovered until after the baby is born. Usually, children born with heterotaxy have problems with their hearts, and they often need heart surgery. Sometimes they need to have surgery more than once to fix the problems with their hearts.
Ethan has had surgery five times. That's a lot for a three-year-old to go through. And he's just about to have another surgery. But when Ethan heard our episode about hearts, he was excited. And he wanted to share his own story with all of you. So his mother, Allie, asked Ethan a few questions, and we're going to play their conversation for you today. Now, remember how his big sister Zoe said Ethan has a battery that helps his heart beat?
Sometimes that's also called a pacemaker. Their mom asked Ethan about his battery. Where is your battery? It's in my tummy. You have? Is it big or small? Small. Small. And can you see it on an x-ray? Yeah. What shape is it?
Almost kind of like a circle? Mm-hmm. So when you were born, did you have a battery when you were born? Yeah. You did? No, I didn't. When did you get your battery? Was it when you were two? No. Yeah. Almost two, right? How old are you now? Three. Yeah? Are you almost going to have a birthday? Yeah.
And what's this on your chest? What is that? Scar. Why do you have a scar? Because my heart is special. Yeah? And what did they have to do to make the scar? Did you have a what? Heart surgery. A heart surgery? How many heart surgeries? Five. Five? Wow. Now, does that mean you're very brave? Yeah. Do you ever get scared? Yeah.
How can you be brave and scared? Because actually I have three feelings. Three feelings? What are your three feelings? Sad, scared, and happy. And happy? Yeah. When do you feel happy? I don't know. Is that when you get to go home from an operation? Yeah. Yeah.
What do I always tell you about being scared? What? Being scared doesn't mean what? Being scared if you're brave even though you do it. Can you tell me again? Maybe you can tell me, Zoe. You're brave even though you do it. Even if you're scared. It's okay. You're still brave. That's right.
Yes, that's right. You can be both scared and brave at the same time. And happy. It's okay to have a lot of different feelings all at the same time. And sometimes that's confusing. That's okay too. Thank you, Ethan and Allie, for sharing your story. And thanks to Zoe for being such a great big sister. We were told that Zoe is really terrific about taking care of Ethan and keeping him safe.
But, you know, it can be confusing and difficult to be a big or a little sister or brother sometimes, too. And it's okay for you to have a lot of feelings, too, if you're going through something like that. Maybe sometimes you feel jealous if your brother or sister is getting a lot of attention because of an illness or an injury. But then you might start to feel bad for being jealous because, of course, you want that person you love to get better.
It's okay to feel those kinds of feelings, and I hope you can find an adult in your life who you can talk to about it so you can tell them what's going on in your mind and with your emotions, and they can help you deal with them. And I hope you'll continue to tell us what you think about the episodes we make. We love hearing about your own experiences with the subjects we cover, just like how Ethan and his family shared about heterotaxy and hearts. Thanks again to the Chandra family. ♪
But Why is made by Melody Beaudet and me, Jane Lindholm, at Vermont Public Radio. Luke Reynolds made our theme music. We'll be back in just one week with an episode about what makes tapes sticky and how erasers erase. Until then, stay curious. From PR.
