Mighty Me, The story of a second chance, love and how a transplant can change lives

In this episode of Peachtree Corners Life, we hear from Analy Navarro, a mother, and author of the book “Mighty Me.” A resident of Peachtree Corners and first-time author, her new children’s book tells the story of how she became a living organ donor for her daughter.

Navarro became her daughter’s living donor in 2018 and allowed this transformative experience to guide her into a new career as an author, an advocate for organ donation, and a leader in raising awareness and funds for Biliary Atresia.

Listen in to hear Rico and Analy talk about the journey of this amazing family.

Resources:

Organ Donor Information: https://www.organdonor.gov
“Mighty Me” Book on Amazon: https://www.amazon.com/Mighty-Me-Magical-Journey-Strength/dp/057891896X
Analy’s Social Media: @the_a_navarro

Timestamp:

[00:00:30] – Intro
[00:02:17] – How Analy and Julia’s Journey Started
[00:05:20] – The Process of the Donation
[00:08:20] – The Importance of Organ Donations
[00:11:11] – Post Surgery and Family Support
[00:16:33] – The Idea Behind “Mighty Me”
[00:18:09] – New and Other Books
[00:20:42] – Funding Biliary Atresia Research
[00:22:31] – Where to Find Analy and The Book
[00:25:10] – Closing

“Thankfully the team that we had at Egleston and CHOA was amazing and they were able to educate us at every level about what the disease was about, what to expect, what the procedures were going to be, what our options were. And so we’re just so incredibly thankful with Children’s and everything that they’ve been able to do for us and for our family and give life back to our daughter.”

Analya Navarro

Podcast transcript

[00:00:30] Rico: Hi everyone. This is Rico Figliolini, host of Peachtree Corners Life. Today, we have a special guest, I’ll bring her on shortly. Our sponsor of the podcast and this family podcast is Peachtree Corners Magazine. Which is coming out. We just put that to the printer this week and we’ll have our issues hitting the mailboxes sometime next week, middle of next week I think. So check it out. It’s one of our biggest issues and we’re talking about holidays in Peachtree Corners along with a lot of other stories in there. But today’s podcast is an important podcast. It deals with a mother and author and her child. But let me start off a little bit with some stats that you all should be aware of. 106,868. That’s the number of men, women, and children on the national transplant list. According to the OrganDonor.gov site. Every year, certain amount get to have a transplant, but it’s a smaller number then what’s on the list. Last year alone, only 39,000 transplants were performed. That means that about 8 lives almost every day pass because there’s not enough living or past life donors to be able to help with the situation. Today’s guest is an author, a mother. She’s a mother first, became an author because of the journey she’s had. She’s a resident of Peachtree Corners and she is a first time author. And the journey she’s had with her daughter that inspired that book because the child had to have a transplant as well. And because there weren’t the right amount of people or actually the right person to donate or the right organ available, her mom became the living donor in 2018. And that inspired this book and our conversation today. So let me, bring her on, her name is Analy Navarro. Hey Analy, nice to have you on.

[00:02:16] Analy: Hi, thank you for having me.

[00:02:17] Rico: Sure. So tell us a little bit about the journey that you had with your daughter. And that must be tough because at some point, you were looking for donors. But then you had to make that decision because no donor organs were available that matched. Maybe not a tough decision for a mother, I don’t know. I’m a father of three kids and I think I would feel the same way. And I certainly would do what needed to be done to save my child. So tell us a little bit about what that journey was like for you and how that started.

[00:02:47] Analy: So our daughter, Julia she’s a first born and when she was almost four months old, she was diagnosed with Biliary Atresia. And that is a rare condition that about one in 10,000 babies are born with here in the US. What that meant is that she was inevitably going to need a liver transplant, and she was going to go into the waiting list. There is a procedure called a Kasai procedure that can be done to help elongate the life of the liver, the native liver. Unfortunately, my daughter was diagnosed too late to be able to qualify for that procedure. Our pediatrician initially missed it and she was diagnosed at almost four months. So at that point, having that Kasai procedure, it was only like a 25% success rate. And so we decided that it was best to just wait for a transplant. We ended up being listed and waiting on a transplant. And we were at the top of the waiting list for a child. Unfortunately, one didn’t come. And maybe not unfortunately, but just one didn’t come. Initially, when we were told that she was going to need a liver transplant we immediately asked, is that something that we ourselves can donate to her? And thankfully the liver is one of the few organs that you are able to be a living donor for. And so we went through the process and I was able to be her donor. It was a very extensive process to be able to qualify as a donor. And it happened here in Atlanta. So she was at Egleston and I was at Emory University Hospital. They collaborate and they are one of the few places in the country that are able to do living donors. And we are so fortunate to be here in Atlanta where that was possible.

[00:04:37] Rico: Wow. Unbelievable. That’s fortunate that you were able to be in the right place. It’s almost like God’s hands, put that there.

[00:04:44] Analy: Exactly. It was tough times, but we were at the right place and we were fortunate enough to be able to be at a place where they could do the procedure and where I could also be a living donor. And I was fortunate enough to be a match for her. They are many parents that have to end up waiting for an organ donor because neither a family member or themselves are able to donate for whatever reason. So they just have to sit there and wait. And that’s a very painful and just dreadful wait for you to just sit there and watch your child deteriorate.

[00:05:20] Rico: Now, most people may not understand this, a certain portion of your liver that was donated. Obviously not your whole liver cause yeah. So what is it? It’s like 25%? They find a portion of it that needs to be donated, right?

[00:05:34] Analy: Yeah. So for Julia, I had to undergo about, I think it was like a two, three day series of tests at Emory. Everything from blood work to scans. I mean, they look at everything. You have to be in optimal health in order to be a donor. And then aside from that, you also have to have the perfect liver. And like I said, it’s, it was a miracle that I was able to donate to her and that we were at a place where they could do it.

[00:06:00] Rico: Wow. So how long was the process from the point where you went under to the point where it was completed?

[00:06:07] Analy: So I went in at around five o’clock in the morning. Before I went to Emory, I went to CHOA, to Egleston to see her before the procedure. And I was able to give her a hug and a kiss, and then I walked across the street to Emory. And then from there on, I think it was about, I remember very little of it. It’s about an eight hour procedure for myself. And halfway through it, that’s when they brought her in and then they started to open her up and get her ready and get the native liver out in order to put my half in there or my portion.

[00:06:41] Rico: So that was 2018, that was three years ago. How old is your daughter now?

[00:06:45] Analy: She’s four. And her fourth anniversary is coming up in March the 26th. And every year we celebrate it as if it were her birthday, because it is a sort of rebirth.

[00:06:56] Rico: Is she aware of what happened? How aware is she of everything?

[00:07:02] Analy: Oh yeah, she knows the whole story. And that’s why the book was born. I wanted to make sure that she knew what she had been through. And I wanted her to feel empowered and own her story. So I want her to be able to share what she has journeyed through and understand the importance and how strong and mighty she is. At the time, she was only seven months old. But since I can remember, I’ve always told her that she has a small portion of mom in her belly. And that it was something that she braved through. And that’s how the book came about. I started telling her all these different stories. And I said, what’s a good way to present this to a child and to help her understand what it is that she’s been through at such a young age. And I was not able to find a book or anything that would, you know, that she could see herself in. So I went ahead and I decided, you know what, I’m going to write a book because she’s not the only child that has had a transplant and she’s not the only child that a parent needs to have this type of discussion with. And sometimes it’s not the child per se. It might be a brother, it might be a friend, it might be a grandparent that had to have a transplant. So this is a good way to present it to them and open that conversation and start that important dialogue about organ donation.

[00:08:20] Rico: It’s amazing. And the book is Mighty Me. Just bought that off Barnes and noble. So everyone should go out. We’ll have the link in the show notes and stuff. It’s a great book. Well-written, beautifully explained actually. Very well done. The artwork is phenomenal. So I think you have a great book there and a great story, obviously. So I’m glad that you were able to do this. Unfortunately, not every parent is able to do this, like you said. And it’s very difficult to find donors online and because of COVID. And you were fortunate also, that was the other thing, 2018 was pre COVID. So when COVID came about, living donors, that dropped. The amount of living donor donations dropped by far. And so there was a push to do donors after death. And that’s been, I think that’s actually been at the highest level, I think in 2020. Something like that, than ever before.

[00:09:07] Analy: The important point that you’re bringing up, because we are one of the happy stories when it comes to Biliary Atresia. Unfortunately, and it’s very heartbreaking, I’ve seen too many children pass away and die either one because they didn’t have a donor that came in on time. Or two, it’s such an aggressive disease that it’s hard to get them to the point. It’s such a fine line between being sick enough to qualify for a transplant and being healthy enough to be able to receive the transplant. And some centers might not have as much experience. And then, so we end up with parents going and traveling to other places to be able to receive a transplant as well. On top of the fact that some centers don’t actually do living donors. It’s so important to start building that awareness about how important it is to become a donor, but then also that there is the option to be a living donor. And as you pointed out at the beginning, there’s a long list of people waiting to receive an organ such as the liver. And many of those people on the waiting list are actually pediatric patients and tiny babies. Julia was only seven months old when she received her transplant. So there are babies waiting on different organs that sometimes we, we don’t think about because we don’t, when we think of somebody waiting on an organ, we picture an adult. We don’t picture a child or a newborn or a baby. But, you know, it’s important to keep that in mind and become aware that we are able to save people’s lives and leave a legacy behind. One that is of love and of life to a child or an adult.

[00:10:45] Rico: You have beautiful kids. I’ve just put the picture on so that people can see. Beautiful kids. Here’s another shot actually, and this is you and Julia

[00:10:55] Analy: Julia, yes. And I’ve gotten many questions from people wanting to be living donors. Especially women that have wanted to donate to a parent or to a sibling, and being pregnant and having a child after being an organ donor.

[00:11:11] Rico: And you’re a great advocate for it because you’ve been through the process. But let me take a step back also, because there’s dangers in everything that’s done in this world. Especially when it comes to transplants. Rejection of the organ donation and all that. So how long was your daughter actually under observation after the surgery was done?

[00:11:28] Analy: So she was there for about a week and a half, almost two weeks. She had some issues post transplant with her breathing. But it was because of her Biliary Atresia, she developed cirrhosis of the liver. So before she received the transplant, she was yellow. And I wish I would’ve sent you those pictures, but she was extremely yellow because her bilirubin level was extremely high. And so as soon as my portion of the liver went in, within a couple of hours, you could just see her looking so much healthier and her skin color completely changed. It was, it’s amazing to see.

[00:12:04] Rico: It’s a bit of a miracle to be able to see that. And especially everything that you’ve gone through. I imagine the family circled round and was supportive of everything?

[00:12:14] Analy: Oh yeah, for sure. My husband, he was amazing. I, I always say that I had the easiest portion in all of this because I was in the hospital. And he’s the one that had to send me out to be the donor and go under the knife. And then after that run to CHOA and take care of her daughter and then send her off. And I can’t even imagine what he was going through, waiting on me to be done with my part of the procedure. And for her to come out at the end and be well. For both of us to be well. And then take care of both of us at the same time, too. Thankfully like you pointed out, we have a strong support system and our families are here and they were able to take turns and watch me. And then also have him stay with her at the hospital too.

[00:13:03] Rico: Just because I know that, I don’t want to get into necessarily health insurance and all that. But was that, were you able to be covered by all that? Did the insurance cover your transplants and all that?

[00:13:15] Analy: Oh yeah, yes. Thankfully we had insurance. And if you are a living donor, the insurance coverage for the person that needs the liver or that needs the organ is the one that will cover you as well. Yeah, we had coverage and it’s, it was a lot that we had to go through. But thankfully we had everything. Everything just all the stars lined up.

[00:13:37] Rico: Yeah, definitely. The hospitals here being able to do it here, not having to travel, or being away for 2, 3, 4 weeks for the whole process to be done. That’s just, I could see how that could be a burden and stress.

[00:13:50] Analy: Oh, yeah, for sure. You know, you’re just so worried. You’re a parent and you know what it must have been like. Thankfully the team that we had at Egleston and CHOA was amazing and they were able to educate us at every level about what the disease was about, what to expect, what the procedures were going to be, what our options were. And so we’re just so incredibly thankful with children’s and everything that they’ve been able to do for us and for our family and give life back to our daughter.

[00:14:19] Rico: Yeah. And even the other side of that, being able to, for some families getting paid time off, maybe. Or being able to do that, to have the financial ability, the health insurance, to be able to do that. And the support system of family. Becomes very important at this point. Does your daughter still have to, I imagine your daughter still has to go back on a regular basis to be checked every once in a while, or?

[00:14:42] Analy: Yes, and I did as well. So she is at the point where she only goes back every six months. Just so they can you know, do some blood work and make sure that she’s doing fine. And thankfully she’s thriving and she is full of energy and life. She’s just amazing. And also initially for the first year, I want to say, I had to go back every so often as well. Because they wanted to make sure that my liver was regenerating and that everything was working correctly.

[00:15:10] Rico: Okay. And the idea is that the liver within your daughter’s body is going to regenerate also, I would imagine?

[00:15:16] Analy: Yeah, and grow with her.

[00:15:17] Rico: Yeah. So, and as far as the, was she having to take medications? Because sometimes with transplants, I guess you have to do that possibly?

[00:15:26] Analy: Yes. So initially she had to take seven different medications and now she’s down to one. And she takes an immunosuppressant that helps her system not attack the liver because obviously it’s not her native liver.

[00:15:40] Rico: Does she have to keep taking that?

[00:15:42] Analy: She has to take it, yeah. It’s a very insignificant almost, it’s like a little tiny droplet that she takes every day, twice a day. And it just makes sure that her immune system is at a certain level where they need it to be, to make sure that it doesn’t go into rejection because of the liver.

[00:15:58] Rico: Do you have to be a little bit more careful because of COVID?

[00:16:02] Analy: Yes. And now parents that are having their children get their transplant right now, I can’t even imagine. Because initially, the immunosuppressants that they take at the beginning of their transplant is a lot higher. And then they start dosing them down a little bit. So for us, we keep our circle very close and small. And it’s just basically family, a couple of friends that we know that are very still cautious. And it’s important for people to keep children in mind that are also immunocompromised. Cancer patients and, and everybody, when it comes to COVID as well

[00:16:33] Rico: Sure. So stepping back a little bit, when did the idea of Mighty Me the book come about? Was it before or after this? When did that thought hit you? That you should be an author of a book like this?

[00:16:44] Analy: Well, you know, I’ve always enjoyed reading and that was one of the things that I wanted to pass down to my children. And with Julia, I always bought her a lot of books and I wanted her to live many different lives. And I thought, what a great story her story is to help educate other children and to help other children see themselves as well. Not as victims of a disease or as victims of life that they’ve struggled with a disease, but more to feel empowered and be able to share that with their friends. I wanted her to have something to be able to take to school and say, look, this is my favorite book, and this is why it’s my favorite book. It’s about me. It’s about my own journey and I braved through this and that’s how it came to be. I wrote the story. In like a day, a day and a half maybe. And then the longest process was trying to find the right illustrator that had the look that I was going for. And that was going to be able to tell the story with the pictures the way I had envisioned it. And as you know, with children’s books it’s half the story and half the illustration. So if you don’t have both and the perfect marriage of both, the story might not be able to transmit everything that the author intended. And yeah. So that’s how it came to be. Eventually I found someone in another country that took me forever, but it’s been an amazing journey so far.

[00:18:09] Rico: She’s in Mexico, I think right? Is where she’s from. I mean, it’s just beautiful illustrative work. So you’re right. I think children’s books or any picture book really, lives on both the writing and the art work and it has to be captivating. And I think as anyone might look through this, they’ll see that. So it was very well done. Do you plan other books as well?

[00:18:29] Analy: Yes. Actually this book has had such an amazing, I received such an amazing reaction within the transplant community. Because as I said before, it’s nothing that we’ve had before. We didn’t have a way to open that dialogue with our children or their siblings and help them understand in a child way what a transplant was and what the journey was about. And so this has been so well received. I’m actually working on another two books right now and to tell the stories of, one is unfortunately the other side and the other end of children that end up not being able to get their transplant. So that’s such a hard thing to, to talk about with anyone, but especially children. And I felt that in my heart, it was something that I had to work on and do as well to bring that about. And it has to do with one of the characters in the book that’s in the Mighty Me book right now as well.

[00:19:24] Rico: That is a tough subject to be able to, I can’t even imagine doing that. You know, as far as owning that journey, transforming that journey, do you see a special mission for your daughter as well? As she gets older, does she participate with you? I mean, she’s only four. But I’m sure, these events that you go to and stuff maybe on this.

[00:19:43] Analy: Yes. She’s gone to a couple of the book signings that I’ve done. And we are also working on putting together a package to donate to the transplant floor at Children’s Healthcare of Atlanta. And so she’s very excited about that. She wants to sign all the books and write them a note and send them little drawings and say you’re strong. And I was like, Julia, that’s so kind. But it’s, I think it’s up to the families and the parents to educate their children on this and make them feel empowered by what they’ve been through. And help them understand that there are other little children that are also waiting and in a way, you’re an advocate for them. And you are an advocate for transplants and for Biliary Atresia. And not to give her a big burden to be able to do that, but just to make it into something that just comes with who she is as a person. And be able to, to be giving in kind and just be considerate and help share the stories of others based on her own story as well.

[00:20:42] Rico: Yeah, she has a strong story to tell. And a loving mother and family, obviously. To be able to go through all that. The fundraising work that you’re doing is through, mainly through the books, I imagine. And they’re available online. I think that, well I know I bought mine on I think it was Barnes and Noble or Amazon probably.

[00:20:59] Analy: Yeah. So you can find it on Amazon. And we’ve worked with Children’s Healthcare of Atlanta before, because they, it just happens too that they have one of the few research programs for Biliary Atresia. So Biliary Atresia is a disease that we don’t know much about yet. We don’t know what causes it. We don’t know how to prevent it. As I said before, the only forms of treatment that we have right now, are the Kasai procedure and a transplant. So we are working with them to be able to fund their research program. And before COVID we actually hosted an event, a fundraiser, and we donated a substantial amount to them through the event as well. And we hope to continue to work with them on this and help find a cure or a way to prevent BA. Because research to us is such an important aspect of a rare disease. You’re not only helping the community, which is something that we love to do as well, but you’re making a global impact. Because they are children in other countries, even here in CHOA. You know, you see people traveling from other countries to be able to bring their children here and have a transplant. So to us, that’s a way of us giving back, being able to help save other children as well. And give back as much as we can. And every holiday season, since Julia’s transplant, we try to hold a fundraiser. And before we had the book, we would donate blankets or toys and do like a toy drive, or a blanket drive. And this year, just to make it that much more meaningful, we want to donate our Mighty book to the transplant department, at CHOA too

[00:22:31] Rico: So while you’re on that, where would people go to besides Amazon, if people search on Amazon, they can find Mighty Me, by Navarro. That’s an easy enough search. Anywhere else that they can find the book?

[00:22:45] Analy: Just on Amazon right now. Hopefully next year, I’m trying to turn it into a hardcover and be able to bring the other books and create that much awareness and donate more too.

[00:22:56] Rico: And is there a website or social media that people can follow or visit to find out more?

[00:23:00] Analy: Sure, yeah. My Instagram account is DANavarro. And as you pointed out, my name is Analy Navarro. So you’ll be, you’ll find me pretty easily. I don’t think there are many of me yet.

[00:23:14] Rico: Yes, for sure. If people do Navarro, mighty Me, I think the book pops up like number one or something. And so portions of the book sales goes to the research.

[00:23:25] Analy: So the fundraiser that we’re doing right now is for every $25, we are donating two books to transplant children at Children’s Healthcare of Atlanta. And also we want to donate additional funds to the research program as well.

[00:23:39] Rico: Okay. And it’s important to be able to do that. There’s plenty of unfortunate diseases out there that don’t have advocates for them. They’re don’t even have, I guess they’re called orphan drugs where there’s not even treatments because there’s just not enough of a sickness out there for pharmaceutical companies to go and create treatments, to research treatment for them. So it’s great that you’re doing this. Obviously there’s a personal experience there and a personal reason for doing this, but you know, you’re the best advocate for that because of that. So I’m glad, one door opens, one door closes, one door closes, one door opens. So the, the idea of the transplant and the book that came about from that is just phenomenal. I was going to say, I’m sure, as you said, there’ll be more books coming, maybe even in other languages as well. That’s a possibility I would think.

[00:24:27] Analy: Yes. As you said, we are, we actually translated the book to Spanish already and looking into Portuguese. I had people from even the Netherlands and Spain and Portugal reach out to me that they ordered the book, they received it. And as I mentioned before is a very, it’s a one of a kind book when it comes to our transplant community. And it’s not just for livers. It’s also as you probably noticed, when you read the book, it doesn’t mention anything about an organ, or it doesn’t mention anything about a liver. It’s just the journey that this mighty little girl goes on to be able to save her own life. And so I wanted to make it as broad as possible so that any child could be able to see themselves in the journey, regardless of what they’ve gone through.

[00:25:10] Rico: Yeah, no, I think the idea of searching, I don’t want to give spoiler alert. But searching for this stone I think it was a good, obviously a good analogy of what, this little girl in the book goes through. So yeah, it’s, I think anyone that’s looking at transplants. Anything quite frankly, hope in something. That journey to be able to find hope and resolve is important. So I would encourage people to go out and search Mighty Me. Find the book online. If you have questions for Analy Navarro, you can find her through the social media that she mentioned. Probably comment and message her on Instagram. Do you want to give us any more thoughts that you want to leave us with, Analy?

[00:25:50] Analy: Yes. I do want to say that you know, sometimes as a parent and especially as a first time parent, you are dealt some cards that sometimes you don’t anticipate. You think about having this perfect little baby, that’s going to be healthy and strong and ou r baby was perfect and strong. Unfortunately she wasn’t healthy. And we had to journey through this very complicated road and there was no roadmap to. So if you find yourself being at the beginning of a complicated journey, just know that it’s important for you to choose what it is that you’re going to make out of the journey and how you want it to end up. I know sometimes a lot of things are out of your control, but if you just trust and become positive and just think positively. And know that your child feeds off of your energy and that as a parent it is important for you to be their rock. To be able to be their powerhouse and feed them that energy and just make the most out of it. And obviously, if you’re not an organ donor, please consider one because you are able to save many lives and you can even do it while you are still living. There are many children, as we said before, waiting on a transplant. And it’s a painful wait for the parent and for the child as well. So you have the power within you to give life to others and to be able to save them and leave a great legacy of love and life behind.

[00:27:15] Rico: Great. Perfect. Thank you Analy for spending some time with us and telling us about your story and your book. Everyone, it’s a great little book. I think you should pick it up, Mighty Me. Find it on Amazon. And if you have questions about the journey or you have your own journey that you want to ask questions about, I’m sure Analy Navarro will be more than willing to answer those questions. So find her social media link in our show notes or search for Navarro, Mighty Me. And you’ll find where she is.

[00:27:43] Analy: Thank you so much. Thank you for having me here. And as you said, you can find me on Facebook or Instagram, and I’ll be more than happy to share more questions or answer your questions too.

[00:27:52] Rico: Excellent. Thanks again. Bye.