Hello and welcome to the Gifted Life Podcast where we have conversations about organ, tissue, and eye donation. And Lori Steele. And I'm Joey Boudreau. And I'm Sally Tundra.
And thank you for being part of our team and wanting to help make life happen. Coming up on this episode of the Gifted Life, we'll talk about a silent hero's wall. A digital, interactive way to honor our donors. Incredible y'all.
And in recovery, we'll be talking to a donor mom, her special story about the neonatal donation. We'll also honor a hero as we do in every podcast and so much more so don't go anywhere. And actually want to ask a favor of you listening right there. All the spread the word.
It's simple. It's simple. Spread the word. You can find us on iTunes, Google Play, Pocketcast, or any of your favorite podcasts now.
And hey, we're on social media. We try to be easy to find. So Facebook, we're donate life, Louisiana, Twitter, and Instagram at donatelifeLA. And hey, hey, Sal.
Hey, you can also reach us at 5048-348-3477. We'd love to hear from you. Yeah, that's our hotline. We may even play your audio as part of this podcast.
We want it to be interactive. We want you to help us make life happen. Let's get to it. In our community segment today, we are so excited.
We want to talk about the silent heroes wall that was unveiled at our Lady of the Lake Regional Medical Center in Baton Rouge. First of its kind in the state of Louisiana, one of the first in the nation. We want to talk about what this wall means. What is it?
Can you see it? Really incredible, right guys? Absolutely. So to talk about this, we have invited Alice Batista and she's the director of mission services for our Lady of the Lake Regional Medical Center.
Hey, Miss Alice. Hey, Laurie, how are you? We appreciate you taking the time. We know that you're very busy, but you're so passionate about what you do no matter what it is.
But let me tell you, I got to see that passion for myself. In person with the silent heroes wall, it is incredible. Let's talk about the digital wall at the lake. It's exciting to talk about our wall.
Well, we are the first in the state and possibly in the nation. More importantly, our wall is a great way to honor our organ donors, our silent heroes, the individuals who gave the gift of life through donation at the end of their life and by sharing their stories as written with their families. But our wall is more than honoring our organ donors. It's also an opportunity to recognize our organ recipients and the gratitude they have for how donation has saved their lives.
And lastly, we also use it as an opportunity to raise awareness for organ tissue and eye donation. And it's pretty incredible. I know that we had some media coverage. We've had some social media coverage, but Joey and I, Sally, all of us were there for this unveiling.
The physical look is incredible. It is. It is amazing. I didn't know what to expect when I saw it, Laurie.
I knew it was an interactive monitor. I didn't know how many there were, but just the space itself. And I know we're talking about the digital monitor, but the space itself seems so serene. It seemed like such a great area for the families of loved ones who have died to go and spend some time and just reflect.
And then, of course, the monitors themselves. Alice, you want to talk a little bit about the monitors and what they look like and what went into that? Yes. We have three 55-inch digital monitors.
They're interactive touch screens. And our middle panel focuses on last year's silent heroes. Those are the individuals we honored during the Get the Life service. And then on our right panel, we have our silent heroes from prior years.
And when we talk about the monitors, when you touch on the picture of our silent hero, of our organ donor, a new screen opens up and it tells that story that the family wrote about their donor. And when we know who their recipients are, we also have the recipients on that page with our silent hero. And then we have our left panel. And on the left panel, we have our recipient stories as well as we provide factual information about organ tissue and eye donation.
And Joey, you talked about the space. It's a special space. We like to refer to it as a sacred space for these families. It's a place for our families to come to reflect on their loved one and the impact that they made through the Get the donation.
And speaking with our donor families, while their loved one dying here leaves them with a lot of sad memories, the wall is truly a source of comfort for them during their time of grief. What they shared is when they come here, they can visit the wall, they can see their loved one, read their story. But they also realize that they're not walking this journey on their own, that there are other individuals who are walking this thing journey. And Alice, I did notice just from looking at the faces of family members and recipients that they just seem so grateful for this opportunity to have their loved one recognized, be able to stand there, spend the time.
And I'm wondering, what did that feel like for you when you were able to see that? You know, Sally, for not only me, but for the entire work group, to see that awe and that joy that the family's had, it's hard to put in words. But the pride that I saw in the work group was phenomenal. That's wonderful.
And you talk about what it meant to families. There's one story that really has stuck in my heart. With a family of about 10 people, they came in and they touched on the woman's picture. And when it popped up, there was a little three-year-old boy in here, it was his auntie.
And he jumped up and ran to the monitor and went, Auntie dance, Auntie dance. And all I could think is, what comfort for that family, not only that day, but going forward, that picture will always be here. They will always be able to come back and see their family member. How lovely.
So Alice, obviously something this magnificent doesn't come up in just a minute. Can you tell us a little bit about the team that you work with and how long it took you guys to think of the design and then of course put it into action? We started about 18 months ago. We knew we wanted to do something different than poster boards on a wall.
We wanted to do something digital. It was a group of six of us that worked on putting on paper, doing internet searches, and really challenging ourselves to listen to the voice of our organ donor families and helping us design this wall. We also listened to the voice of our recipients. And we really were purposeful in making sure we heard and saw it through the wall reflect some of their wishes and requests.
Alice, we mentioned earlier on the podcast about the unveiling of the wall, but really you guys made it a little more special, kind of kept in line to what that hospital is all about and you actually blessed this space. Yes, we did. Part of our Catholic heritage in tradition is when we opened a new space that we always blessed. And we did that on June 9th.
And the blessing is a prayerful time to reflect on in this case our silent heroes and their families, the organ recipients in our community. We also used it as a time for praying for those across the country, waiting for a life-saving organ, as well as the 22 individuals who die every day while waiting for a life-saving organ. We also used it as a time for prayerful time to pray for our clinical team and the LOPA team who helped care for our silent heroes. So what's next for the Memorial Wall?
In listening to our silent hero families as well as our recipients, we've heard an opportunity to post these stories on our hospital webpage. At present, we have our silent hero stories from 2014 and 2015 on our website. And we will be going and adding additional donor stories as well as recipient stories to the website. If you want to visit the hospital website, just go to www.olomc.com.
As for our space, we do want to make some enhancements. One of the things we want to do is to be able to embed podcasts and videos into these interactive panels. And then we also want to have a kiosk for individuals to be able to sign up to register to become an organ tissue or eye donor. And lastly, we are looking at creating satellite locations of our wall throughout the hospital.
All amazing. We love it. We love your passion for what you do. What we also love is that this is a solid, solid, solid, and so we love it.
It's a solid, static location right now where anyone can go and see and become inspired. So tell us how to find a silent hero wall in our Lady of the Lake in Baton Rouge. We know lots of our families go back there again to find comfort. But tell us how those listening will be able to find it as well.
The wall is on the first floor of the hospital. We are near the entrance. We wanted a space that was accessible to anyone at any time. And if you enter the front door of the hospital, the information desk is there and they will point you to the wall, which is just a short way down on the left-hand side.
Everyone is so nice there and all smiles and just wants to help. And we appreciate that atmosphere. Alice Batista, Director of Mission Services at our Lady of the Lake Regional Medical Center. Well, Laurie, you mentioned the word amazing and it's certainly a great adjective to describe.
Alice and the team that they've got there at our Lady of the Lake. It's so wonderful to have such a great passionate team that's so pro-organ-eye and tissue donation and the impact that they have because of that passion. Since Alice has been there for the last six years as our organ donation champion, over 540 lives have been saved there at our Lady of the Lake. Incredible.
Incredible. And then we have this silent hero's wall. But let me tell you a lot would not get done without these partnerships. And we actually talked to Lopez Samantha Miller earlier about what is happening between Lopa and our Lady of the Lake.
Joining us now is Samantha Miller. Donation Services Coordinator for Lopa. Hey, Sam. Hey, thanks for having me.
So glad to have you on. For those of you who don't know, Mrs. Samantha, she works closely with those clinicians who save lives each and every day at our Lady of the Lake Hospital. We just talked to one of those wonderful people, Miss Alice.
I don't know where I would be without my Alice. She's phenomenal. It's just a great group of people, very positive in what they do and very good at what they do. We talked to Alice about Miss Samantha, the silent hero's wall.
All that would not exist without the partnership between Lopa and our Lady of the Lake. No, absolutely it would not. Our partnership as it grows, it just becomes easier because we've identified that our mission is really aligned. We want to do what's right for our patients and their families.
And it just speaks about into the culture that we're able to have at the Lake of the Laker Foundation. Now we heard from Alice that this is state of the art. We have digital interactive screens, which is amazing. The wall didn't always look that way.
It's evil. It has. It has. So in the past years we've had larger poster style photos on the wall of our donors and we share their stories as well.
But as we invited more families to be on this wall, a space got a little limited for us and said we would have to change out stories. And we just never want to have to take a story down. And so with this new technology, it's allowed us to share all of the donor stories and will forever honor these heroes. And Sam, I want to know what this project means for you.
I know that it was a labor of love. I know it was a long time coming. I know Mom was there for the big reveal. I know family's been very supportive.
So this is more than a job. This is about honoring those heroes and celebrating life. What does it mean for Sam? Oh, so many emotions.
And that's a day I'll never forget the unveiling of this wall. It's truly been an honor to be part of such a legacy. Seeing these families, seeing their loved ones on this wall has been just a wonderful experience for me. And what's great is we're starting to get feedback in.
It's positive. Feedback, what are you hearing? I'm hearing amazing feedback from these families. And there's families coming from out of state to see the wall.
There's families that visit the wall often because they've shared it gives them just a little piece of comfort. And that's what it's all about. Yeah, I'm sure we'll continue to hear more stories. We'll hear from a donor Mom coming up in just a little bit here on this podcast.
But can you give us a glimpse of what's next? Our Lady the Lakes always pushing that envelope. What's next, Sam? Well, we dream big here.
We love working together and pushing forward. And we're excited to see how it unfolds. So stay tuned. Yeah, we are too.
So we're going to have you back on the gifted live podcast and tell us what's happening. The Silent Heroes wall. I'm just an incredible piece, a great way to honor those heroes. I want to thank Sam Miller, donation services coordinator with Loba.
Well, that's Sam. She's such a firecracker. She's got such a passion, you know, and that partnership that she's developed with Alice and the team there at our Lady Lake. It is such an inspiration for the rest of us and it disseminates throughout the state.
Yeah, it's like a family atmosphere there and here. It's just wonderful. We talked about the Silent Heroes wall. We hope that you check it out.
If not in person online, those donor families, you know, Sam talked about hearing from them. One of the mothers of a hero called into our hotline. So we do have that hotline. That number is 504-648-3477.
Yeah, so use that and we say that we use the audio on the podcast. That's what we're going to do now. Jennifer Colone, she's a mom of hero, do-do, is what they call him. She's going to tell you more about his story, but let's listen in to what this Silent Heroes wall means to her and her family.
You can hear the emotion. Hi, my name is Jennifer Colone. I'm the mother of David James Colone Jr. I've had an illness to do his whole life.
He passed away November 3, 2014. To do as an extraordinary person, he was funny and goofy, talented, hopeful, and he dreamed big even through his adversity and his darkest age. He made it through with the hope of living life to his fullest. To do talking to the true meaning of love and selflessness.
To do as a hero. That a day goes by that we don't think about our son. Brother, grandson, cousin, nephew, friend, and a child of God. Thanks to our lady of the late and Lopa for being there from the beginning with unconditional love, support, understanding, compassion.
And gratitude to us, people from all over can hear and learn about the due legacy. He was one of the many faces on the side of the wall of heroes that our Lady of the Lake and Baton Rouge, Louisiana. It's bittersweet because our Lady of the Lake is where our son passed away, where we feel we left him, but it is also the place where he not only gave life to three recipients, but is honored and remembered. It's a place of love, pride, and hope.
It's a place for opportunity. If someone sees the wall and reads the stories to see the videos of donors and the recipient stories, they can possibly change the mind of an organ donor to become a donor and give new life and hope to someone and their families. Our to do would be so proud and honored. Him being an organ donor with his wishes.
He told me about a year before he passed. This was what he wanted to do. There was a chance to save him, save him, but if not, let him go. And he wanted to be an organ donor and save others.
It's a place where donors' families to go and fill closer their loved ones, to sit and honor them. It's a place where recipients and their families also tell their story and express gratitude for their donor and their story of how their life was affected and saved by their donor. I want to mention that we have to come up so close with the dude's heart, donor, Mr. Charles Henderson, and Mr.
Chuck Nutter, the dude's liver recipient. They are our family. We are forever united as one by the do. We love them much just because they have our sons' organs.
We love them because they are wonderful, beautiful, extraordinary people who we have grown to love. And we are so grateful for their gratitude and letting us be a part of their lives. They're stuck with us now. I want to end this with what I say every morning.
I'm going to open my eyes. Today to do my one step closer. I'll see you again. I would like to thank everyone for listening and giving me the opportunity to tell our to do story.
Special thanks to Loka, Ms. Laura, you and Mr. Manta and our Lady of the Lake. God bless everyone.
Take care. Thank you. You just heard what a phenomenal experience this has been for Jennifer and for her family. I've talked to a lot of donor families and to hear such emotion and such pride that she takes in being able to see do do on the wall for her to be able to go to the lake, spend time there at the wall and not only having conversations with other family members, but also a private conversation with you do.
I know this means a great deal to her and we just heard what it meant. Thank you Jennifer so much. It's such a beautiful thing. We're trying to share this with everyone, you know, obviously through our podcast, but also on our Loka website, Loka.org.
We're going to put together a snippet of each of the donor memorial walls that are there for all of our hospitals throughout the state that have them so that you guys can see a little bit and share in how some of the hospitals honor their heroes. Yeah, so keep checking Loka.org. In our recovery segment today, lots to talk about. We're going to learn a lot and we're going to talk at those heartstrings.
We brought in one of our Loka lifesavers, Loka nurse Laura Liguain, Hey, thanks for having me. So the topic that we're talking about today is neonatal donation. So what I want to do is provide you with some basic facts about neonatal donation. And so Joey's going to kind of cover that with neonatal donation.
Often times with the circumstances of the childbirth, they can suffer an anoxic injury or a brain injury. And some of those do become organ donors. We've had neonates as small as up around four pounds or so that have donated part liver and now neonatal kidneys where two kidneys can be transplanted to an adult even. So that's something kind of new in donation.
But there's also an opportunity out there or research donation. And that comes mostly with neonates that may have suffered from some other, maybe anencephalic issues or something else that causes them to be deemed non survivable. Okay. So Laura, I'm going to bring you in.
She did some of my training when I was learning about this topic here at Loka, but anencephalic is what? Anencephalic is a baby that's born with no brain. They do have a brain stem, which means they can be born alive, breathing, hard-beating, but it is a non-survivable condition. Some babies live a couple of days, some only a matter of minutes.
And are these organs for research? Yes, these organs are for research and they've actually changed the way they study diabetes now because of these neonatal organs going for research. Wow. So, I'm not changing the future here.
One of the other reasons that we have here is not only to educate, but we also want you to help us through this next story of special ties to a donor mom. Yes. It's hard not to with these cases I imagine. All these cases are very special to my heart.
This one very much. Kelsey, Whitney is joining us today and she's going to talk about her daughter Austin. Hi. Hi.
Kelsey, can you kind of take us through your experience? Do you mind? I'm not a doctor. Last year we got to Father's Day.
I had a physician that I'm not a president. We had recently lost our third child, between the spirits and having another baby maybe feel whole. In July we called my opening remover appointment and my husband and I were interviewing her as going to her ultrasound. But thankfully we were given a good report.
Due to my previous miscarriage, my doctor wanted to give me back in about two weeks just to be sure that everything was going well. And I went into that appointment and took risks that the students at ultrasound type performed the ultrasound and I knew that something was just off. My doctor stated that I'd be fed with what she called oddly shaped. At 11 weeks of station, my mom and I had been an I were given the diagnosis.
I was diagnosed with an insectoid. And as I said before, it's a neural condition and there's no cure and we're not through that. But before we let the doctor office, my husband looked at me and said keeping the baby or termination would ultimately be my choice. That's not something that I had ever wanted to do.
So as long as we were both okay physically, we wanted to kill you as long as possible. The next time I was in an adult's guest, we were given an issue donation at a possibility and we both felt at peace after our discussion with our situation and we knew that this was our answer. So we were telling that over here about our decision. She contacted the local representative who then directed me to war.
And talking to both of them, they were like, they were on the correct task and this is definitely something we were chosen to do. At the end of September, we found out our sweet baby girl was just developing as well as she possibly could. And she had a fiery personality. From this 11, we were able to feel her little movement and when we were scheduled for early morning ultrasound, I had to skip a call for the doctor.
He slept for the daddy and she was just beautiful. The first couple of times we caught her sleeping during the ultrasound. She went to the vacuum. She went to the vacuum.
She went to the vacuum. She was actually exposed to music on a regular basis. Nothing meant to be at random. She had a good old church hymn.
She was about to be on my phone. She was about to be on my phone. She was about to be on my phone. She was about to be back down.
In November, we met with Laura and she answered all of our questions and she said everything that we had done to return. We had our choice of what we wanted to happen at the hospital and preparation. In January, after three immuno-reduction procedures, our peer and middle specialist killed us but we had made it abundantly cosopically. On January 15, I ate three.
We met in Austin with born. We met in Austin Rose. At 35 weeks, she was three pounds, 12 ounces and 14 inches long. Then on the team of born, Austin became skilled at just going to send kids to be able to back-track her and be withheld by her family.
Austin was loved. She was loved by so many people, especially her brother and sister. She was beautifully perfect. At 9.42 a.m.
She went home. My husband and I count the fact that Austin died from and is definitely a significant blessing associated with this profound loss. It gives us comfort to know that she died at people that are without pain. The early diagnosis gave us time to enjoy every moment we had with Austin rather than just let time pass us back.
We were prepared for Austin's death and God gave us time to prepare ourselves and our other two children itself. We were able to have end up discussions about Heaven who was there and why Austin got to go to the tomb. When the moment came, we weren't ready but we were prepared. We knew that Austin lived to live in Heaven rather than with us because she would be okay there.
We listened to the people who expressed their sympathy for what they call our tragic loss. But the way we feel is that we didn't lose Austin and it's far from tragic. We know exactly what she is. There are far too many good things occurring as a result of her death.
My husband and I believe it's important for people to know that Austin's lungs, fingers, and spleen and her liver were able to use percucute donation. We counted this as a silver lining and then it's a black arrow. It gives us peace to live with the possibility that Austin's lives were able to save the lives of others. As parents, we hope that our children grow the people we're proud of and Austin surpassed my expectations.
She gave the ultimate sacrifice of hopefully allowing someone else to live. We believe that God has answered a prayer by giving us Austin. He had a special plan from the beginning. Although we didn't align with our own, he knew best and through tissue donation, he has provided a powerful example of making a difference for everyone who knew of her.
Our hope is that everyone makes a difference through your organ and tissue donation because of one precious baby girl. We hope that the deaths of other people donating their organs would be awesome, like I see. Wow, little Austin Rose, hero, and Kelsey, I'm listening to you and I'm thinking January 2016, not so long ago, you're just a strong mom of a strong faith and just an inspiration. What would you say to moms out there that are maybe in your same situation?
That their babies have a purpose. We never know what the future holds for our children, but that we just have to trust that we're able to make the best choices if they aren't able to make them. And if this was truly a way for us to cope, we would be able to see something so wonderful happen through what people call our tragedy. Oh my goodness.
Now Laura, I know that you're close to lots of these. What will you take away from this case? Laura, this case has been a divine intervention from the beginning. And Kelsey, I think you can attest to that also.
Kelsey was given the diagnosis and her as many doctors don't realize that donation, even if donation is an option and her doctor did not. However, one of our staff members actually has the same doctor as Kelsey. And she went to her appointment wearing her lupus staff shirt. And that's what the doctor asked her.
Hey, is this a possibility? And that's kind of how that story unfolded. You know, our goal right now is to really get the education out there to the doctors, to the nurses and to these moms because it's not really a well-known thing, but it is something amazing, as you can tell by Kelsey's story, that really makes it. And there's a need out there.
There's a great need for neonatal donation. Researchers are contacting us constantly saying, you know, they need these organs. The things that they've been able to do are truly amazing. Wow.
Kelsey, we appreciate your sharing your story. We think Austin Rose is a hero. Thank you so much. I think we're here.
Yeah, thanks for sharing her story with us and we will continue to do that. If there are moms out there that may find themselves in the similar position and maybe just want to talk through it, info at lopa.org, or you can call our hotline here on the Get to Life podcast. And that's 5046483477. And at this time, as we do in every podcast, we will be honoring a hero.
Today's hero is Amy Fox. Yeah, we learn about Amy from her mom, Charlene. She tells us Amy went through life working, going to school and smiling even when type 1 diabetes got in the way. It took its toll on young Amy when she was 32.
She suffered six strokes. By the time Amy was 39, she had 12 strokes. One day, Amy decided to tell her mom that she wanted everyone to honor that red heart on a driver's license. Her mom had told her, you probably won't qualify.
You have type 1 diabetes, other illnesses, run a lot of medications. But Amy was resolute. Please, mom, just honor my wishes. And mom said, okay, fine, whatever.
A few weeks later, it was Amy's time. The last stroke left her in a coma for three weeks. It was Christmas time. And when all hope was gone, donation was an easy decision, says mom.
And this family's darkest hour donation was a light in the tunnel. Amy's beautiful liver would live on. You can read more about Amy's story. You can see her picture and you can see the beautiful quilt that this family put together to honor Amy.
All you have to do is visit our heroes page at lopa.org. And we say thank you to Amy for the gift of life. And our question and answer segment today, Joe. If I sign up to be an organ, I and tissue donor, am I also signed up for bone marrow donation?
Laura, the answer to that unfortunately is no. You're talking about two different registries here. When we recover organs, tissues and eyes, generally we're talking about the life saving organs and then tissues such as skin, bone, vessels and heart valves. And then of course, cornias.
But the bone marrow is not included in there. That's a completely separate registry. And you can actually look up that we do have that information on our local website. That's lopa.org under donation facts.
We've got all the information that's there for you to sign up or at least, you know, get more information, get more education about being a bone marrow donor. And normally we're out in the community on campus or at health fair. There's a bone marrow representative in the room to get more information as well. But if you have questions, specific things to send our way info at lopa.org.
Remember a hotline? Joe, do you know it? I do. It's 504-648-3477.
I don't know if I believed it or not. I know. 504-648-3477. Maybe we'll work on a jingle.
Alright, more to go. Another episode of the Gifted Life has come to a close. I'm more down. Wow, we had a list of guests today.
Thanks to Alice Batista, Samantha Miller and Jennifer Colon. We're talking about the digital donor wall there at Our Lady Lake. Very wonderful memorial that they've got there. that they've got there.
And of course, thanks to our own Larlogwen and Kelsey Whittington for sharing such a touching story about Little Austin Rose. It pulled on my heartstrings. Kelsey and Jennifer Cologne, who paid tribute to her son, Doudu Cologne, who was a hero, just special ladies out to inspire, out to help save more lives. And we were happy that they chose to be a part of our podcast today.
So thank you for listening in. We hope that these stories continue to go far and wide because we think if you listen to an episode like this one, you will be inspired to go out and do something. But listen, we have this podcast Hotline and we want you to be a part of an episode, right, Sal? Absolutely.
And we want you to call in 504-648-3477. Give us a call. You know, if you'd like to wish someone well who's waiting on a transplant, who's already had a transplant, or you'd just like to say hello to someone, please do so. We look forward to hearing from you.
Yeah, and we love that people are listening from different states, different countries. Continue to help spread the word, guys. Go out today, do something you don't normally do to help us make life happen. Have a good one.