The Highwire with Del Bigtree - DAD DENIED CHANCE TO SAVE SON’S LIFE

Episode Date: March 30, 2022

Dane Donaldson was the perfect kidney donor for his 8-year-old son Tanner suffering from stage four kidney disease, until the Cleveland Clinic turned him down for this lifesaving procedure due to his vaccination status.#LetTannerLive #ClevelandClinic #KidneyTransplantBecome a supporter of this podcast: https://www.spreaker.com/podcast/the-highwire-with-del-bigtree--3620606/support.

I went through a health issue last year that really pointed out that I wasn't taking, you know, enough care of myself. I was out there, you know, trying to do my best to make a difference in the world, but I had let my own health go. And I thought about at times, like, what good to mind to my family? I'm overweight, I'm not feeling well. In fact, I'll be totally honest with you, there was a time there where I could not do a single pull-up. I remember thinking, I couldn't lift myself out of a burning building, let alone anyone else. Luckily, I'm I've remedied that. But what if that really came to you directly?

What if directly you started recognizing, I have a child that needs me, needs me to be healthy, and I need to do something about this. This is a very interesting story with a lot of different elements, but I think you'll hear that there's a little bit of all of us in Tanner Story. My name is Tanner William Donaldson. Our son Tanner is rapidly,

approaching nine years old. He has a tremendous zest for life, really very outgoing, almost like the mayor of his third grade class. Busy kid loves basketball, very caring, loves his dog Joe, loves his family, all around great kid. I was 40 when I found out I was pregnant with Tanner. We went in for an ultrasound to find out what the sex of the baby is. And the ultrasound indicated that he had the birth defect that happens early in the development of the baby. So we were like, all right, well, let's just go in and fix it. Well, this isn't something that they could necessarily fix. Around 18 to 20 weeks into my pregnancy with Tanner, the ultrasound kind of uncovered a condition called posterior urethral valve.

PUV happens in just boys, and it distorts the entire urinary track. Boys have the urethra, and there is a valve, this tiny little hair-like valve, that opens and closes. The valve overgrows and blocks any urine from coming out. So if the urine cannot get out of the baby, in uteral, the kidneys start to back up. And if he can't get the urine out of him

because the blockage he has, then he can't get those lungs to perform the way they need to. See, babies ingest their own urine. It pushes out those bronchial tubes, develops those lungs, and that's how that works. And then if he's born without lungs,

there's nothing they can do. And I just remember that sinking feeling, but I said, this is our child. We got this. Let's just go down this road and we got it. When Tanner was born, he was crying right away, so we knew he had lungs. I think he came out of her in about four seconds.

He wasn't very big. You know, he weighed five pounds at the time, but he was full of urine. They immediately put a catharine, so they broke through the valve that he has, and they extracted a pound of urine out of him. So just think of it, 20, of his body weight. He went from weighing five pounds. He really weighed four pounds.

He was actually born with the P.U.V. diagnosis and stage three chronic kidney disease. The doctor basically said once the damage is done, it's irreversible. He's going to have kidney problems, and he's going to deal with those for the rest of his life. Right around that six, eight month period, the urologist told us that he's going to need a catheter. My question was, For tonight, how long? She said the rest of his life. Tanner gets a catheter every three hours to drain that bladder and again, try to keep

his kidney function the best we can. He does sleep with the catheter overnight, so we do have to take his catheter out in the morning. And throughout the day, I do have to go into school and do an intermittent cathing procedure with him. We do struggle with the intermittent caffing. You know, telling an eight and a half year old, hey, you need to come in from riding your bike

and take care of this. You know, we call it, give me five minutes. My favorite things to do for fun is play outside. If I wasn't sick, I'd be able to do what my friends get to do. Because of my kidney, I can't play sports that, like, they can. Tanner has the left kidney that is pretty just atrophied, and the right kidney is functioning at 18 and 20%. So that's kind of the only kidney that's giving him

the life that he has right now, so. Tanner doesn't need a kidney transplant at this moment, but I'll say this, without it, I don't think his life is long living. It might be 18 years old, 20 years old. I'm a bit nervous. The longer he can go on his native kidney, the better off he's gonna be. I remember sitting there and we first talked

about it. He was maybe 18 months old. And I said, well, you know, I'll be his donor then. And I remember the doctor kind of looking at me and looking at my wife and said she's probably a better candidate. And the reason being is I was pushing 250 pounds. So I remember leaving that meeting. And I just said to Jen, I said, man, I failed you as a husband. I'm failing these kids as a dad. From this point forward, I'm going to make my health the most important thing of my life. And I just started one day and said, all right, what do I need to do? And you got to eat better. You got to get up.

You got to exercise. And I'm up every morning between either 4 o'clock or 5 o'clock in the morning. I think the last three years at our gym, no one showed up more than me. I'm down 60 pounds from when we started. If I'm the one when they knock on the door and they call on me, that was my responsibility. I created this family. It's, you know, and it's on my shoulders to get it done. So I remember going back into the clinic and they said, you know, your markers, you're matching

four out of five markers, which was great. Only a sibling typically hits five out of five. And just so you know, the more markers you hit, the less anti-rejection medication you need. And they said, hey, you've done everything you needed to do to be approved to be his donor. I don't know how many miles I have left on my kidneys, but if it helps him, it's part of being a parent, I think. I am joined now by Tanner's parents, Dane and Jen. Dane and Jen, first of all, thank you for sharing your story with us today. Thanks for having us. We appreciate it. Thank you. Taking it back to that moment, my wife and I actually went through a troubled pregnancy,

and I remember that moment. I'll never forget that day during the ultrasound where, you know, it was clear things were not going right. And, you know, I asked the doctor, And we were sort of shocked in a situation to be told that there's really nothing that can be done. There's only one option for you, which is whether or not you want to decide to abort this child. Was that, what were the options given to you in that moment? Well, that was something that was probably the second thing that was discussed. First, it was the information of what they're seeing on the ultrasound machine. and next is what the Ohio laws were and terminating the pregnancy.

And I was shocked, quite frankly. Yeah, that never entered our mind going in there. We just wanted to know if you're having a boy or a girl. And I remember the nurse saying after the first ultrasound, he wants to see it, the doctor was to see in the next room. Then we have a better ultrasound machine in there. And I just remember, that's very odd. Okay, we'll go.

And then again, he said this, you know, was pointed out, this is bladder, shouldn't be able to see it at this stage. He's there's kidney. Shouldn't see him. He's got a blockage there. And I don't want to say him a typical guy. So we're going there and fix it. You know, and he said, you can't just go fix it, Dane. We'll fix it if he's born.

And I picked up on the if. And I was like, whoa. And then he said, whatever you do, just don't go Google posterior erythral valves in any conditions. Well, what do you think I did three seconds after walk out of there? Yeah. And so our world came crashing down pretty quick. Well, just the reality hit very quickly of what to do next. And then how did you make it through that comment?

Did you have conversations? I know I'm throwing a curveball at you because I know this isn't a question, but I have been there. And I know those conversations, you know, do we continue with the pregnancy? Of course, for us and clearly you did too. We decided no matter what. And I guess I'm bringing it up because, Dean, I remember saying something very similar to my wife, which was, we love each other. This is just our experience.

This child is beautiful. You know, no matter what happens, this is our experience. Was it difficult to sort of come to that sort of decision? More so than I thought. And I'm always speaking, I can't speak for Jen. I just speak for my part. I'm adopted. So thinking of, you know, having an abortion just didn't.

I couldn't even say the word. They called it a termination specialist would be assigned to us if we wanted to. And, you know, and how many weeks out it could be. And they had us tour like part of the hospital where the sick kids, like really, really sick kids were at. And it was heartbreaking for us. And then I remember, you know, just asking, I just like, I hate to say, is this all we're dealing with. And, you know, the doctor that we had was very calm. And he said, you know, let's do an amniocentesis.

And so we did. And everything came back that, yep, you're only dealing with kidney failure and obviously urinary track issues. Everything else is good. And for the two days when we had to make this decision, and I talk a lot, I don't think I said a word, Jen and I, we couldn't hardly look at each other. Neither of us wanted to make a decision. It was way more challenging than I ever thought.

But ultimately, I couldn't live with any other decision that we had. This is what we created. This was God's plan for us. And we looked at each other and said, these are our cards. Let's play the best hand we can with these cards. Jen, as the mother, you're carrying this child inside of you, you know, and to have that beat, like you're directly involved with the help this child. And what was that pregnancy like knowing that, you know,

also there's a bit of a race against time, isn't there? If this goes, if this goat gets out of control, the blockage becomes too serious, this baby might not make it. How did that affect you as a part of your body and your experience of the pregnancy? Right. It was a reminder. We had to go through ultrasounds every week, and it was a reminder each time, although it was great to see my son every week, but it was a reminder.

just how difficult this road may be with him as each week went by. But I knew immediately when I saw him, even when we were told his condition, he's going to come to this earth and we're going to do the best we can as parents. All right. Well, thank you for sharing that. I mean, I know that's very private, but I think for people, I just know when we were going through the situation that we had, that nobody ever talks about it. You feel all alone. And yet you realize, as you tell your story,

so many people out there are going through very similar experiences. So, Dane, you know, we see in there this discussion, obviously your son is going to need a kidney and you recognize I'm not even the, you know, I'm not even the candidate I should be. And so you really set about, and it's a great motivator, right? I mean, there's not a better of motivation in the world than being there for your child.

what did it feel like the moment that the hospital told you you have achieved all of that work trying to get there your kidney is going to be great for your child what was that moment like after all that way you know i i put it right next to having the birth of my two children and marry my wife you know it was it was just it was a culmination it was not you know anybody that struggled with weight loss or or any of this stuff you know it's it was it was just it was a culmination it was not you know it's But you don't get large overnight and you certainly can't reverse it overnight. So it was, you know, years of eating right and exercising and foregoing things. And I don't want to say losing friendships, but if I wasn't out at the bar eating wings and drinking beer until midnight, somebody else took my spot there. So, you know, I had a singular task in mine and that was to be the best version I could of myself. and make myself harder to kill, whether that's a car accident, that's given up a kidney, that's tacked on a virus, whatever it is, and just trying to become the single best version of myself, which is not, there's no end point to it. You just can't, I can't stop today and just say,

okay, we're there. Let's hit the pause button, you know, the cruise control. So. Well, you look great. Obviously, you did a fantastic job. So for those of you that are watching right now, everything is great. You know, Dane is passed with flying colors. His kidney is available to his son. But remember, all of this took place before the COVID pandemic.

Then when the pandemic hit, that changed everything. When the pandemic hit, I was just worried more so about if his health declined, would we be able to do this process? Because so many things were shut down. getting in to get his labs, you know, possible for, you know, those first couple months.

I contracted COVID August of 2020 as well as my husband, but, you know, I'm an avid crossfitter as well as my husband. So exercise is very important to us. Eating all organic as natural as possible, and you know, with a few extra supplements, we recovered beautifully. So October this, year, 2021. We saw the first one hit the news. A decision by Cleveland Clinic to make vaccines mandatory for anyone involved in a kidney transplant surgery. I saw that and I thought, well, that wouldn't pertain to us. We've been in the system for his whole life. And all they've done is recruit us to stay there. That Tanner is a perfect candidate for this transplant. And you guys are going to do so well together as a family. So it's like, it wouldn't pertain to us, especially

since I've had COVID, I can prove to them I have natural immunity. So on October 4th of this year, 2021, I received an email from kidney transplant and pancreatic transplant that every recipient and living donor would need to get the COVID-19 vaccination. The Cleveland Clinic is going to start requiring donors to be fully vaccinated. So I thought, hey, their job is to do no harm. They know that I'm the best option for Tanner. So right away, Jennifer said, let's meet with whoever made this decision.

The meeting was set up. They're all there. Most of them in that room know us well. Tanner's doctor, the doctor that would pull the kidney from me, the doctor that would put it in to Tanner. And I asked them, why would I have to have it? because you could get COVID while we're transplanting you to your son. Guys, you're going to cut my body open, remove an organ that I need to function.

And you think my concern would be I could get COVID. I tell you, Jen lost it sitting there. I looked them each in the eye. And, you know, there was a lack of, you know, there was a lack of, humanity there. They've made the decision that the vaccine is more important than saving my son's life. What take me to that moment. I mean, I, you know, I can't imagine as a father. I can't imagine my wife in that situation. You know, the life of your child is what you're talking about. And they're literally putting a red tape around that and not letting you access it. What is that moment?

What is the, what is the emotion you're feeling in that moment? moment. Anger, frustration. You just, all I really was hoping for dialogue. And what it was we know better than you, no matter what. And again, I'm not speaking at all of them. I'll go into as much detail as you like, but my emotions were raw. They were angry. I was scared, frustrated, you know, not hopeless, but where do we turn? What are the next options? These are the same people again that for nine years begged us to stay there. And I don't believe that the doctors that were in there made these decisions. I think they're carrying out the orders. I will say that. We wanted to meet with the decision makers and they weren't the ones there.

Wow. And so we're talking about the Cleveland Clinic. I mean, this is one of the biggest hospitals, you know, one of the best hospitals. I worked on the doctor's television show as a producer. We worked with the Cleveland Clinic all the time. Truly a fantastic, you know, hospital system, records in so many different departments. But as you said, they had been selling you on staying with them. You did everything. They're, you know, and yet in this moment, you know, as a mother,

What were your thoughts? Well, as my husband said, we've done everything. We've been through many, many years of doing the right things, monthly labs with Tanner. Every 90-day visits, I complied with everything. And again, when I got the email regarding this COVID vaccination, I thought, too, thought the same thing. It's not going to apply to us.

We're already in the system. We're already approved. This is, you know, taking a kidney from my husband and giving it to my son. So I was deeply hurt by this decision. So that's why I called a meeting. You know, Del, when we asked, go ahead. No, go ahead, go ahead. I was going to say, you know, one of the things I asked when I looked them all at,

I said, all right, with having. The T-cell immunity, here's my test that I had it and knowing that I've had it and my body reacted fine. I was down maybe four days on a Tuesday. I mowed law on Saturday. We were prepared for it here at home. And I asked them, what medical benefit could I receive? What I receive? What is the upside for me to receive this vaccination?

Looked around the room. Yeah. The infectious disease doctor said, It would shorten your time that you would have COVID. I said, so I would go from four days down to three days. And, you know, and again, I was being, you know, a little bit of a jerk. And I could tell that we were never going to meet on the same playing field. And then Jen asked one question at that moment that just kind of stopped everything.

And she said, can I ask you this question? And they said, sure. She said, if he takes the vaccine and his body has a reaction to it, is it a possibility that he cannot donate his kidney, whether it's myocarditis or his kidney function drops or anything like that. Is that a possibility? Yes, that's a possibility. So now I have no upside and all downside. And I told him, well, we're willing to sign any type of waiver against COVID, the whole nine yards. You know, and, they all have they've all had COVID and we had COVID you know I mean what's I just couldn't get it and you know at that point in time you can see Jen had lost I mean here come the tears and everything

I tried to hold as strong as I could um the one the one gentleman the surgeon that was has worked with me from fat gain to now watching everything go on you know when he came up at the end he shook my hand looked me in the I could tell he did not not agree with what was going on. At least if he did, he was a great actor. But I can tell there's that he didn't agree with this. And you know, again, we're not taking it away from somebody else. This is from a father to a son. We've been in their system this whole time. I've done all the work that they're asking me to do. And you can't prove one medical benefit that I would get by it. So so just to be clear, Tanner,

is not in that life-threatening moment at the moment. This is all prepping. You know, currently, I think it said in the story we did with you, he only has one working kidney and it's approximately, what, an 18% is that what I understand, 18% function level? So it's getting close, right? It's getting close to having that emergency moment and now you're not even in the system.

Can I ask you how you've discussed this with Tanner? Is this is he aware of the conversation or what's going on or do you just keep this all to yourselves? We've had the discussion with him. Yeah. You know, as much as what a nine-year-old can comprehend. Right. Yeah. We don't go in there and say, hey, we have no options for you.

You know, but we talk about, you know, these are the things that we've done. Here's our beliefs. Here's what we see. And, you know, we didn't get here overnight. We understand our health and our immune system and what we're after and what we're trying to provide to him. So, you know, you asked, does he need it today? The clinic in us, we have always talked about preemptive transplant. We were never going to let him get to.

And I say we, the clinic and our family, let him get to a place that he would go on dialysis, spike his blood pressure, everything else that goes along with it. It was if it drops to that 15% function and we can't stabilize that in 60 to 90 days with medication adjustments and other things and we need to be ready. So it's always about, you know, yep, ready to rock right now. We get the phone call, you know, fast for a couple days and we're downtown and, you know, getting the surgery done and moving on to the next phase of his treatment. It's amazing to me that, and I'm sure you sit there every day with the news as more and more the reality of this vaccine be a complete failure. The restrictions being let up. Our show just showed politicians all over the world saying this is the biggest mistake we've made. Yet you're in this hospital system that is in the dark ages on this conversation, as it were.

Just to point out in all transparency, part of the reason we know your story is you've been working with our legal team. Aaron Siri. So he has sent a couple letters on your behalf. First of all, what was the first letter? What was the goal of the first letter sent by Aaron Siri to the Cleveland Hospital system? I think the goal was to, well, at least our understanding, we wanted them to just, yeah, respect our rights. Maybe you have another conversation. I would have been open to another conversation with the decision makers. And with the natural immunity, let's And we used their own study. When I was in there, I had their own study about natural immunity and how they tested it.

And the infectious disease doctor said, we didn't test that long enough. Yet at that time, the vaccine had been out four months. But so, you know, so our goal has always been to come to the table. Let's have a discussion. Let's not paint every situation with a broad brush. Yeah. Let's take a look at our individual situation, my health, Tanner's health, in how we could go about, you know, finding a resolution.

So one letter was sent, yeah, one letter was sent was not responded to. You've just sent a second letter, I believe yesterday, Aaron, series sent a second later. Let's just take a follow-up letter. Let's take a look at that. I think I have it somewhere. Where's the monitor? There it is. The hospital must provide Tanner and Mr. Donaldson the opportunity for a religious exemption

and conduct the procurement and transplant surgery. for all the reasons stated here, and we request response by 5 p.m. Eastern on March 30th, 2022, Tanner and Dr. Donaldson Reserve All Rights. Essentially, you are ready to, you know, do what is necessary, right? I mean, this is your child hanging the balance. I want to try and help you today. I think that there's nothing better than public opinion, and the Cleveland Clinic, you know, needs that good press. We need to reach out as a community. So I want everybody that's watching this show. Let's help this family out.

It shouldn't have to come to get into a courtroom. We want you to reach out to the clinic themselves. And so here is that information. Contact the Cleveland Clinic. There's their phone number. You can share this story on social media at Cleveland Clinic and just put hashtag Let Tanner Live. That's the hashtag we're putting together.

Let's tell them how important it is to stick with the science here that we know that Dane has got the best. that there is to offer, which is the natural immunity. It's the longest lasting immunity. This is insanity. If they continue to treat this situation with a lack of reasonability, then we will broadcast to the world and continue to put pressure. This is what we can do as a society and as really a family together in this. And so we have a very active audience, Jen and Dane. And so I think that you can expect that they're going to be getting some phone calls today.

Go ahead. No, no, no, you go ahead. And that's exactly what we want. We, you know, again, honestly, we didn't want that at all. We wanted to just continue on like, hey, moving forward, everybody that's coming for, we're going to request this. But if you've been in our system before, we're going to go ahead and grandfather you in. You're going to move right through it.

Unfortunately, it's come down to this. We didn't want to make this a national, even a local thing. We just wanted to, you know, provide our son with the best possible treatment we could. What we were promised from the beginning. Right. And I was willing, I'm willing to do that work. And, you know, again, there's still no guarantee that my kidney is going to be fine inside of him. So there's just, it's a frustrating situation.

But from our stance for you and the help that you have provided and Elizabeth, over there with Syrian Glybstad. They are fantastic and we really, really appreciate it. And the other part that we looked at is we want our story now told because we think there's other people out there

that may not be in the same situation with a very honest, heartwhelming story. But their story to them is the most important one. So if this is a domino effect, can get one hospital to fall that causes another one, then that's what we're after. You know, I mean, again, we just want some common sense dialogue, which we've had zero.

Right. Well, that's what we're after too. Thank you for sharing your story. I believe you're right. There are people that are suffering in this insane world that has lost all reality and humanity and reasonability. We need to work to get back to that. That's part of the work that we need to do is we rebuild this.

country in the world and certainly medicine get back to the Nuremberg Code and the original oath of do no harm these doctors are doing harm if they they continue on this path and we'll make sure the world knows it thank you for taking the time to share your story and certainly give that beautiful child of yours a big hug for us okay thank you very much we appreciate it yes you bet you take care well