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Interviewer: When many people think of organ donation, we tend to think of adults and ourselves and did we check the box. But kids need organs too. Kids and organ donation. That's next on The Scope.

Announcer: Medical news and research from University Utah physicians and specialists you can use for a happier and healthier life. You're listening to The Scope.

Interviewer: Dr. Jill Sweney is a Pediatric Intensive Care Physician and she sees both sides of the organ donation process with very young children. Dr. Sweney, I wanted to ask you a question. So it's your job, if a child looks like they're going to die, to go to the family and talk to them about would you like to have your child's organs donated. That must be really hard. It is a very tough situation and now you're going asking them for something. Tell me about that.

Dr. Sweney: It never gets easier. Generally, after we deliver the bad news that you we don't think their child is going to make it, we give them time to process that and then we do go talk to them about the potential of their child's organs being able to be transplanted. We have a good relationship with our organ procurement organization and they help us with some of those conversations. But some families don't have any knowledge about organ donation or the potential.

Interviewer: They never even considered it? Yeah.

Dr. Sweney: They never talked about it with their families before. And so more often than not, they are very interested in something good coming out of the worst day of their life.

Interviewer: I try to put myself in your situation. I have to go up to this family now, worst day of their life, and try to give them this information. It would be easier not to have to do that. Your life would be easier.

Dr. Sweney: Yes.
Interviewer: But yet you still do it. Why?

Dr. Sweney: I get to see both sides and I say, "I get to" because it really is an honor to get to be so influential in these families. We also get to see organ recipients, kids that have been in the hospital most of their lives with illness who then come out and make improvements as soon as the new organs are put in.

Interviewer: That quickly?

Dr. Sweney: Yes. It's often fun to see, especially with the kidney donors. They may not have had any urine output for sometimes even years. To see the family see that they're making urine so quickly is really, really inspiring.

Interviewer: Changing diapers just becomes a blessing.

Dr. Sweney: It does. It does.

Interviewer: Yeah. So you see both sides of it. You've seen how organs can dramatically change a child's life. But yet there's still a shortage of organ donors, not only for children but for adults as well. Am I correct in that?

Dr. Sweney: Right. Right. And that's another unfortunate side of working in the ICU is that we, unfortunately, do still see kids that are on the waiting list who have waited just too long and they pass away.

Interviewer: Why is there that shortage? Do you have any idea, any knowledge?

Dr. Sweney: I think it's partially awareness. I think that a lot of us think we would certainly want to do that, but we haven't had the conversation with our loved ones. And in that moment of stress, when they need to make a decision, they don't they don't know what we would want to or if we're passionate about it. Just having a conversation at the dinner table with your family about if something bad was to happen if that's something they would want to do.

Interviewer: I guess I never considered child organ donation before. How young can a child be and still be able to donate organs? Is there any sort of age limit?

Dr. Sweney: Not really. We've had donors in infancy. Certainly heart donors and small babies, there are plenty of kids waiting for new hearts due to congenital malformations and even kidneys are being used clear down to a very small size.

Interviewer: One of the challenges, I think, is how do you get somebody that is not an organ donor to be an organ donor. What would you say to that person? What are some of the things you say to help them make that decision a little easier for them?

Dr. Sweney: I think stories are probably the best way to convince people. There isn't a donor or recipient story that isn't powerful. They're all amazing. The people who have to make those decisions for their loved ones are amazing people that are giving a gift that they're not going to see as much of the payoff from, so to speak, as the parents of the recipient, to see the hope that they've had and then to be able to see that their child is actually going to get out of the hospital. Telling those stories, I think, are the best and the most convincing.

Interviewer: What are some of the other benefits of organ donation for the donor? We talk about just thinking of I've given my organs. A single organ donor, a lot of times, can affect five, six, seven people's lives. It's not just one person. But what other benefits have you seen that the donor gets?

Dr. Sweney: So I think that the donor's family, you see a sense of peace in them where they can now start to make sense of all of the whys and kind of "now what." After the death of a loved one, they can know that they live on and that their loved one made a difference. That's bigger than anything they could do while they were alive.

Interviewer: Certainly bigger than donating blood, which is what the giving the gift of life . . . this is really the gift of a life and not just in the physical living sense. Completely changing somebody's life, a child who now can go out and play and learn and grow up.

Dr. Sweney: Yes, absolutely. That's really what makes it worth having those conversations.

Interviewer: Do you have any resources for parents or anybody that's considering organ donation, whether it's they want to have the conversation at the dinner table that you recommend about their children or about themselves that they can get some more facts or information?

Dr. Sweney: The United Network of Organ Sharing, or UNOS, is a great resource, as well as our local organ donation organization, which is Intermountain Donor Services. They have a lot of information on their website as well.

Interviewer: Any final thoughts? Anything I forgot to ask or anything you feel compelled to say?

Dr. Sweney: I don't think it's ever too early to have conversations with any of your loved ones, whether it be your parents, your siblings or even your children. Most children are incredibly interested and these days most of us know somebody who has been affected by either donating or receiving organs. I don't think it's ever too early to have those conversations.

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Interviewer: If you're this close to wanting to be an organ donor but maybe there's a myth or a misconception that you just need to clear up before you can finally check that box that, "Yes, you want to donate" then this is the podcast for you. I'm going to clear up common misconceptions and myths about organ donation next on The Scope.

Announcer: Medical news and research from the University of Utah physicians and specialists you can use for a happier and healthier life. You're listening to The Scope.

Interviewer: The month of April is Donate Life Month and if you are hesitant to check that box that says, "Yes, I will be an organ donor" because you have a misconception or maybe you've heard something. We're going to try to dispel some of those right now. Jill Sweney is a doctor, she's a pediatric intensive care physician, and let's talk about some of the common myths and misconceptions about organ donation. I think the first one is someone else is going to do it.

Dr. Sweney: Right. And I think that that's something that most of us have in our minds is that other people have checked the box on their driver's license as well. And that's just not the case. I think so many of us are renewing our driver's license and don't even think about what that check box means. And we also don't talk to our families about what we would want if something were to happen to us.

Interviewer: And I think in my case too, I think every time I get there I see that check box and I think, "Oh boy, this is a decision I probably should put more thought into than I have. So I'm not going to check it this time, but four years from now I will."

Dr. Sweney: Exactly.

Interviewer: I wonder if that happens.

Dr. Sweney: I'm sure it does. We're all in a hurry at the DMV. The other thing is I think there's a lot of misconception as to the quality of care you would get having that box checked. Organ donation is something that really does not even come to the minds of physicians until we're all ready having difficult conversations about the end of life.

Interviewer: I think that's another common maybe myth or misconception is that the fear that the doctor might hasten my death to get to my organs, but that cannot happen.

Dr. Sweney: No, and actually when the first conversations happen about organ donation, we invite a separate entity to have those conversations. All hospitals in the United States have a designated organ procurement or organ donation organization in their area, and we invite those coordinators to come have those conversations.

Interviewer: And at what point are they invited to have those conversations, when the patient is pretty sure that they're not going to live or...?

Dr. Sweney: Yes. And actually in the case of donors after brain death, it is after the determination of brain death has been made.

Interviewer: And then brain death is death.

Dr. Sweney: Yes.

Interviewer: As commonly people know as death. What about this misconception that I'm not going to be able to have an open casket funeral if I donate all of my organs?

Dr. Sweney: Yeah, that's actually very common, but these incisions are very small and would not be seen in a dressed individual.

Interviewer: What about the "ick" factor? It's kind of gross to think about that moment where somebody might take my organs out of me, or even worse that my moment where I might die before I'm ready to.

Dr. Sweney: I think that the "ick" factor could very easily be subsided with education as far as who are the recipients of these organs. There are children, there are moms, there are dads, and there are people that are going to be able to go outside and play where they weren't able to before. And in looking at it that way, there's just not a lot of "ick" associated with that.

Interviewer: Yeah. So when we talk about all these real people, these moms, dads, brothers, sisters, children that these organs can help, how many people can a single organ donor, how many lives can that person change?

Dr. Sweney: So it's actually up to about five to seven different recipients can benefit. It used to be just more the kidneys and the heart are what we thought about. But now we can actually transplant the pancreas and relieve someone of the burden of Type 1 diabetes. There are a growing number of diseases that are treated and even cured with a liver transplant, especially in children. Relieving the burden of daily dialysis with a kidney transplant, and that's actually two recipients. Each of them get one of the kidneys.

Interviewer: And then what about tissues? What are some of the tissues that are used in that instance?

Dr. Sweney: So if the heart itself cannot be transplanted, the heart valves can be used. And those are very commonly replaced in both adults and children. Some of the skin can be used in burn patients. I think people are very unaware of the number of joint surgeries that are done where bone is actually used from a donor. And then corneas can be transplanted, and that's quite remarkable because many of the recipients are unable to see and then are free of glasses.

And honestly even donors whose organs are maybe not functioning to the degree that you'd want to put them in another individual, there's a lot of these organs that are used for very important research -- liver cells, kidneys, skin. Research is happening with those all over.

Interviewer: Obviously it's the decision that can change somebody's life, but it's also a kind of decision that a lot of us kind of have to come to, I think, with the right information and weighing the pros against the cons. Is there some place else that somebody, that maybe we've gotten a step closer to donating could go to do a little bit more research.

Dr. Sweney: The UNOS, the United Network of Organ Sharing website is a good resource as well as our local Intermountain Donor Services website.

Interviewer: What would be one takeaway that you would want somebody to have taken out of this conversation? If you could only get one message across, this is it.

Dr. Sweney: I think to make this decision before you're forced to. Ask loved ones what their preference would be and really take the burden off of yourself in that time by having that conversation beforehand.

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