Jun 3, 2015 — One of Dr. Jill Sweney’s jobs is to talk about organ donation to parents that have just lost a child. It’s tough, yet she does it because she has seen how organ donation can instantly change another child’s life. She talks about her experience, the benefits to the donor’s parents and the recipient, and why it’s important to know the donation wishes of all members of your family.

Interview

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.

Announcer: thescoperadio.com it's University of Utah Health Sciences Radio. If you like what you heard, be sure to get our latest content by following us on Facebook. Just click on the Facebook icon at thescoperadio.com.


For Patients




Sign Up For Weekly Health Updates

Get weekly emails of the latest health information from The Scope


Subscribe on Itunes Download Podcast