Cheryl Martin (Host): There are more than 100,000 people here in the United States on the wait list for an organ transplant. Every donor can save a life. We learn more about this precious gift from one mother's touching story. Holly Campbell is here, along with RN Vanessa Kabes, an ICU Nurse Manager with Guthrie Clinic. They will both unveil the impact of organ donation. This is Medical Minds, Conversations with Guthrie Experts, a podcast from the Guthrie Clinic. I'm Cheryl Martin. Welcome, ladies. So glad to have you on.

Holly Campbell: Thank you.

Vanessa Kabes, RN: Thank you for talking to us today.

Host: Let me begin with you, Vanessa. Provide us with an overview of organ donation. What does the process typically involve?

Vanessa Kabes, RN: So when hospital professionals have exhausted all treatment options and make the final determination that a patient with a severe brain injury has no chance for recovery, a series of tests take place to determine the patient meets brain death criteria. All hospitals are required to notify their affiliated organ procurement organization with the imminent of a patient.

The organization will then evaluate the patient's chart, medical records, and other criteria and consult with the medical team to determine if the patient can be a donor. If the circumstances surrounding the patient's death indicate that they may be able to be a donor, a transplant coordinator meets with the family.

The coordinator offers support to the patient's family or next of kin and engages the family in a donation conversation that provides them with full information on the power, meaning, and life transforming nature of the donation decision, shares questions that other families or potential donors commonly ask, and answers any questions that the family may have about any aspect of this process. If family or next of kin agrees, the organ procurement organization then begins the process of matching the potential donor with a candidate on the list of patients awaiting transplants maintained by the federally regulated United Network for Organ Sharing, UNOS. The list of individuals awaiting an organ transplant is sorted by a patient's medical urgency, degree of match to the organ, time on the waiting list, and geographic location. This list does not reference race, gender, age, income, or social status.

Host: So, how does Guthrie specifically contribute to the organ donation process?

Vanessa Kabes, RN: Organ donation is critical for the health and wellbeing of thousands of people across America. However, for every person that receives the phone call they've been waiting for, dozens more on the list pass away never having received a suitable organ for transplant. The need for organ donors is tremendous, and with less than 1 percent of registrar's donors making it through the donation process, it's a need that grows daily.

Specifically here at Robert Packer Hospital, we made a difference to 18 organ transplant recipients who received a second chance at life because of the 7 organ donors from our hospital, 1, 425 tissue recipients and 22 cornea recipients are enjoying restored mobility and sight because donors from our hospital Guthrie Clinic in 2023.

Host: Vanessa, what would you say are some of the common misconceptions about organ donation that you encounter, and how do you address them?

Vanessa Kabes, RN: Some of the most common misconceptions that I've heard mostly at bedside, are the myth that if I'm in an accident and my medical professional knows that I'm a registered donor, they won't try to save my life. Our number one priority is to save every life. Paramedics, nurses, doctors will do everything possible to save your life. Organ procurement organizations are only notified after all life saving efforts have failed.

Another myth that we hear quite often is my family will have to pay for the costs related to my donation. The truth is donors and the families are not responsible for any costs related to donation. The costs are incurred by the organ procurement organization. I would say probably another myth that is commonly heard is my organs are not of any value because of my medical illness or disease. Very few illnesses or conditions prevent someone from being a donor. At the time of death, CORE reviews medical and social histories to determine suitability. Although someone may not be able to donate blood, it does not always prevent the individual from donating organs and tissues.

Host: I am so glad that you have just debunked those major myths. So, from your experience, here's another question. What impact does organ donation have on the lives of the donor and recipient's families?

Vanessa Kabes, RN: In many of the cases that I've been involved in, organ donation is considered the gift that is offered to a family on the worst day of their life. I've heard many times, the miracle that you can save another life, it's a silver lining when there's nothing at all. Donation affects more than the donors and recipients. It also affects the families, friends, colleagues, acquaintances who love and support those in need of transplantation and who benefit from the renewed life and improved health after transplant. And Holly has so much more to share on being a donor family.

Host: And that was just a perfect segue. Holly, your story has touched many hearts across the nation. Tell us about your son's generous act of organ donation.

Holly Campbell: Well, back in 2007, I was fortunate enough to have my second son born that May. And he was a healthy baby, little small, a little fussy, but he was healthy. And when he was about two and a half months old, I left the house for the evening to go to a work function. And while I was there, a sheriff's officer came in, and told me that my son was in the hospital and I didn't know if it was my older son or my baby at first. And then found out that Jake who was, like I said, he was two and a half months old, had stopped breathing in his bassinet and my husband had done CPR and called 911 and EMS had responded and they'd taken him to our local hospital, but he was unresponsive, and there was no sign of brain activity.

And then they repeated the test the next day after transferring him up to Rochester Strong Memorial Hospital and found the same result, that there was no sign of brain activity. And my husband and I had previously discussed organ donation for ourselves as that being what our wishes would be if circumstances arose, and so when we knew that Jake was not going to recover, we actually asked the hospital staff if Jake could be an organ donor, and they told us that he was a candidate for corneal donation as well as potentially being a heart donor or able to donate his heart valves. And we needed some time to kind of sit with that and process. And they said, well, let us go check the list, the list that Vanessa mentioned that, UNOS keeps and see if there's a match on the list. And they came back to us a few hours later to tell us that there was a match.

There was a little boy in Iowa who was just two weeks old who had a heart condition that required a new heart, and Jake was a perfect match. And we hadn't really talked about what we wanted to do in that little bit of time we had had while they were checking the list, and my husband and I both just said, yes. We just knew in our hearts that it's what we wanted to do, that it was the right choice.

Host: And I'm sure you have had no regrets.

Holly Campbell: None, none at all. I know it can be a very hard decision for some people and that is completely understandable. For us it was an easy decision, and I think the fact that it is something that we had talked about for ourselves beforehand really made it easier. And that's why I encourage people, when I meet them, to think about it, for themselves before they're ever faced with a situation to have to try to make that kind of decision for a loved one. Because it does make it a lot easier.

Host: And didn't you kind of see it as a sign that when they went on the list, they immediately pinpointed a child only two weeks old who was a perfect match?

Holly Campbell: I think, for us, knowing that there was a family out there. When we were faced with the reality of it, when we first brought it up and they said there might be a match, it was this nebulous thing that we couldn't really think about, but knowing for a fact that there was a family who had a child who would die without this heart, it made it a lot easier I think, and it wasn't only that it was an easy decision, it was knowing that Jake would make an impact and make a difference in the world and that part of him would go on.

And it brought us a solace and comfort that we would have otherwise not had in the face of losing him.

Host: You talked about making a big difference and actually in 2023, your appearance on America's Got Talent, along with the mother of your son's heart recipient, was incredibly moving. Millions have seen this. It's also on YouTube. How did the two of you meet?

Holly Campbell: So after we said goodbye to Jake, we had very limited information. We knew that the baby was two weeks old and that it was a boy and that the transplant took place in Iowa. And that was in August of 2007. And in October, we received a letter from our OPO, our Organ Procurement Organization, that said that the transplant had been a success.

And that was all we knew. And then a few months later, my husband was having a really hard day, and he went online and went into Google and he plugged in the information that we had and was able to locate a baby boy who was two weeks old and received a heart transplant in Iowa on August 16th of 2007.

And so my husband and I were certain you know, what are the odds that there was another heart transplant that happened that fit the same criteria that same day. So we were pretty sure that this was the little boy that received Jake's heart and his name was Beckham and his family had a blog that they were keeping to keep their extended family updated on everything that was going on.

And so we just started watching the blog and thinking about reaching out to the family. And I think Andy and I both wrote a letter to them in our heads, countless times. But we just weren't ready to take that step yet. And then the next fall, when Beckham was a little over a year old, his mom posted on the blog that she had written a letter to the family. And so we actually knew that we were getting this letter from them before it came, which was kind of funny. And when our contact at our OPO reached out and said, Hey, there's a letter coming to you, we said, we actually already know, because they have to check with you to make sure that you want to receive this letter. There's a lot of privacy laws, as you would expect, involved. And so we, received the letter and then we reached back out and did the full disclosure thing and said, we've actually known who you are for quite a while now. And that would've been in the fall of 2008.

And then in the spring of 2010, my family was planning on going to the Transplant Games of America, which is an event held every other year for recipients to participate in games similar to the Olympics, except it's for all ages.

The youngest competitors are often just like two years old, and the oldest may be in their eighties. And they had been looking for performers and when I said goodbye to Jake, I sang the song For Good from Wicked to him and I thought this is the perfect message for an event like this because it has a line in particular that's always gotten to me that says you'll be with me like a handprint on my heart and of course the overall message of the song is that I have been changed for good because I've known you.

And so I had sent in an audition and they asked if I would sing at the opening ceremonies. And we had been talking with Beckham's family about if they could go and meet us there at the games and they weren't sure. So I actually called Kim and I told her the story about the song and how I was going to perform it.

And she said, you're not going to believe this. And that's when I learned that when Beckham came out of surgery after receiving Jake's heart, that is the song that Kim sang to him. So it's the last song I sang to Jake before they took his heart, and it is the first song that Beckham heard from his mother after receiving that heart.

Host: That is an amazing story and you shared that on America's Got Talent, so since then, what has been the impact of sharing your story so publicly?

Holly Campbell: It's hard to know for certain. I don't think we'll ever know exactly, but I know that a lot of people have reached out and said that they've decided to become an organ donor, because of this story, because of Jake and Beckham's story. And my husband and I both teach, and we often share our story with our students when it comes up organically.

And many of them will come to us when they get old enough to get their license or their permit, and they'll show us how they have their little heart that New York state puts on their license to share with us that they've registered as donors. So anecdotally, at least I know that Jake has touched a lot of lives.

Host: So, have you been able to notice a change in people's perceptions or interest in organ donation?

Holly Campbell: I think at least within my community, I've noticed a change. And I spend a lot of time with students. A lot of my students are right around the age of 16. And I can at least say within our community, that the kids have thought about it more. And I think personally knowing someone touched by organ donation and hearing that story, is so much more impactful than statistics. We can say to people how many lives you can save and how many lives you can enhance through tissue donation and how many people need an organ and are waiting on the list. But, until you hear a story like Jake and Beckham's, I think it's too distant for people to really think about.

So that's part of why for the past going on 17 years now, I have taken every opportunity to share this story in the hopes that it will change people's hearts and in terms of their thinking about organ donation.

Host: That is a powerful message and just in closing, are there any other messages you would like to share about the power of organ donation and the difference it can make?

Holly Campbell: I think Vanessa alluded to this a little bit. For me, knowing that organ donation has a positive impact on the recipient, that's obvious. Someone's life is saved and therefore, not only does it affect their own life personally, but the lives of everyone who loves that person because you get that second chance at life.

But being the member of a donor family, having your loved one be an organ donor has an incredibly positive impact on the people that are left behind. For Andy and I, it was the silver lining in a situation that was otherwise, the worst you can imagine. I think losing a child is something that is unfathomably painful.

But knowing Jake lives on through Beckham, that he granted two people's sight, that everyone that knows and loves Beckham is positively impacted by Jake's gift. And knowing that so many people have decided to become an organ donor because of Jake; that means his legacy lives on. And it's incredibly precious to us. And it takes some of that pain away.

Host: Holly thank you for being such a great ambassador. Vanessa, anything else you wanted to add before we wrap up?

Vanessa Kabes, RN: I do just want to add one more thing. Being an organ donor is so easy. You can indicate that you would like to be a donor in the following ways. Register with your state's donor registry. Most states do have a registry. You can check the list at organdonor.gov. You can designate this easily on your driver's license and like I mentioned before, tell your family, make sure your family knows your wishes regarding donation.

Host: Holly Campbell and Vanessa Kabes, our time together has been so informative. I just want to thank both of you again for enlightening us on the power of organ donation, the gift of life. Thank you.

Holly Campbell: Thank you.

Host: To learn more, visit core.org. That's core.org. If you found this podcast helpful, please share it on your social media and be sure and check out the entire podcast library for other topics of interest to you. This is Medical Minds, Conversations with Guthrie Experts, a podcast from the Guthrie Clinic. Thanks for listening.