Donating your child's organs when the unthinkable happens is not normally something parents ever think of. If you've been following my recordings, you know that a dear friend lost her teenage daughter recently. We had been very close to her daughter since she was a baby. And it was amazing that even in this difficult time, my friend thought of others. Her daughter was an organ donor. She improved the lives of at least six other children by this selfless act.
Before I was a pediatrician, I worked in organ transplant as one of the original 12 organ placement specialists for UNOS, the United Network for Organ Sharing. My job was to take information on those who had been declared brain dead, enter it into the computer, and find matches. That means finding those people waiting on the transplant list, who were genetically similar enough to the persons whose organs were being offered and coordinate with the transplant teams on both sides to get lifesaving organs from one person to another.
People can declare if they want to be organ donors on their driver's licenses or in their wills. But what happens when a child passes? Parents have to make that decision under the most difficult of circumstances. The process starts when a child is admitted to the intensive care unit and the doctors there suspect that the child will not recover from their injuries. They will discuss if the parents are interested in donating their child's organs if their child is declared brain dead.
Brain death happens when the brain essentially stops being able to do what it normally does — think, feel, and tell the body what to do. It cannot be reversed. While the heart can continue to beat and machines can keep a patient breathing, the brain is no longer working. A child may appear to be sleeping, but they're not. They're kept alive by machines and medicines. When the machines are turned off, the rest of the body will die, just as the brain already has.
Specific exams are done by specialists to confirm brain death. Someone is never declared brain dead without all of those tests being done to confirm that the brain is no longer functioning. Once brain death has been declared, someone from the local transplant team, called the organ procurement organization, will come and meet with the family. They are usually medical personnel with special training in how to handle this most sensitive situation. They will be able to answer questions and help the family through the process.
Once parents give consent, the paperwork begins, and that is where what I did comes in. When donors and recipients are matched, organ placement specialists will help with transportation to get the organs to where they need to go. Once everything is coordinated, the donor is taken to the operating room where the organs that were placed are then removed from the body and the machines are turned off, and thus, the patient has now become cardiac dead. Their heart stopped beating and they are gone.
The donor patient can have a full open casket funeral if desired. The organ procurement team works closely with funeral homes to make sure this can happen. For privacy, the recipients of the patient's organs are not disclosed to the donor family. But the organ procurement team does let the family know how many organs were able to be transplanted into waiting recipients.
While nothing can make the pain of losing a child suddenly better, families often say that knowing that, during the tragedy of their loss, they were able to give the precious gift of life to another and that helps the healing process begin. Their child will live on through those they have helped.
Knowing their friend was an organ donor started the conversation with my boys. They both told me that they would like to be donors if anything happened to them. They know their father and I are both registered donors as well. If you would like to be an organ donor, you can sign up at UNOS, UNOS.org/register-to-be-an-organ-donor. I would like to dedicate this podcast to all who have made the choice to donate and save another life. Thank you.
Most parents have never thought about the difficult decision of whether or not you should donate your child’s organs when the unthinkable happens. Learn the potential benefits of pediatric organ donation and the considerations involved in the process.
Dr. Campsen: If you are being evaluated for an organ transplant, you're going to come in to the University of Utah for a full day workup, and one of the people that you'll meet is our social worker. Today, we're going to talk about that part of the organ transplant visit.
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Dr. Campsen: My name is Jeff Campsen. I'm a transplant surgeon at the University of Utah and I'll be talking with Melissa Morales, one of our social workers at the University of Utah Transplant Clinic.
So we have people that come in who are in organ failure and need an organ transplant and we try to have them come in during a full day visit to meet a medical doctor, to meet our financial advisors, but also to meet you as the social worker. And I'd like to talk to you a little bit about what that visit's like and what is your role in that visit?
Melissa: Anytime I've kind of explained to patients what I do, I sort of start with, "I'm here to make sure that they are a good candidate and I want them to not be at risk." I take a detailed social history and some of the things that we talk about is their mental health history. We talk about having adequate support, this is family support, emotional support, making sure that they have sufficient resources. A lot of our patients are from out of state and so they have to stay here for up to four weeks.
And overall, it's about compliance. It's about making sure that they are going to be a good candidate, they're going to follow the medical team's recommendations so they have excellent results after transplant.
Dr. Campsen: So that's what they can expect from your visit. Is there anything else that they should be prepared for when they come in?
Melissa: I think it's important for them to know that the reason why we're here is because we want successful results. This isn't necessarily to rule someone out or to find out anything negative about them but it's really to see who they are and what resources they already have in place and what's available to them, how we can further help them if they need to be.
Dr. Campsen: So once you see them, you're going to give them recommendation to the Transplant Selection Committee on whether or not they should receive an organ transplant. And based on what you're saying, have you ever actually said no to somebody? And if you have, are there avenues for them to change and then proceed with their organ transplant?
Melissa: So I actually haven't ever said no. I would say that most of the patients are doing well. Again, they have this support, these resources in place. There are times where patients come in with unmanaged mental illness and they need additional support from either an individual therapist or a psychiatrist, and we help make those referrals to community services and get the help that they need.
Dr. Campsen: So as part of the transplant team then, how does your interview really affect the transplant process?
Melissa: So I sort of serve a dual role. I am there to evaluate and to assess how I think that they would do post-transplant. But I also am there to advocate, to link them to these community resources, to refer them out if they need to be. You know, we see these patients about once a year, and so there are times where I have to follow up with them more than that if there are any concerns on my end. So we get to build a connection, a relationship throughout their listing, and it's great.
Dr. Campsen: But this dual role is interesting because not only are you an advocate for the transplant program and helping the transplant program select the right people to give organs to, you're also a member of the team of the patient. And how do you navigate that dual role?
Melissa: You know, my goal, my purpose is to make sure that patients are successfully transplanted in a safe way and that they have the resources and support that they need, making sure that they're linked to exactly what they need that will help them have successful results.
Dr. Campsen: Well, I know what advice you've given me. What advice would you actually give a patient that was coming in to clinic to see you?
Melissa: I think something really important that I like patients to know is that their mental health really affects their physical health. If they are depressed or have anxiety, all those things are going to exacerbate especially after transplant, and I want them to know that we have these resources, we have ourselves, and we're available to help them through any sort of difficulties that they might have from an emotional, psychosocial side. You know, I really like making these connections with patients. Sometimes I do wish that I had more interaction with them than just once a year. But just seeing how successful they are, see how different their lives can be, a lot of them go back to work after several months and, you know, they talk about how grateful they are for our team and really for this process and having gone through that.
Dr. Campsen: I know that I always like to say that basically, once a patient gets listed and they get an organ, they're always a member of our team and they always have medical resources. But they also have social resources, correct?
Melissa: Right. Yeah, so we're available to them post-transplant. You know, we usually say for about a year after but we're happy to meet with patients any point whether it's been years out or, you know, within a few months.
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