00:05 Maddie: Hi, and welcome to another episode of Talking Transplant, the podcast all about organ and tissue donation. My name is Maddie, and I'll be your host for today.

Austin Health acknowledges that this podcast is recorded on the lands of the Wurundjeri people of the Kulin Nation and pays respects to all Aboriginal and Torres Strait Islander nations. We also extend that respect to Aboriginal and Torres Strait Islander people listening today.

Having an organ transplant is a big thing for someone to go through, and for most people, there's a lot of fear and uncertainty in the lead-up.

One factor we haven't spoken about yet is how do you tackle that uncertainty and illness while being a parent? How much do you tell your child? What's the best way to explain to them you're about to receive a transplant?

To help us navigate this, I would like to welcome Dr. Donovan Moncur. Donovan is a child psychiatrist here at Austin Health, and he's going to help give parents some tools and information on how best to explain a complex situation like this. Welcome, Donovan.

01:08 Donovan: Thanks very much. Nice to be here.

01:11 Maddie: We will also chat to Sally Yeung. Sally has had a kidney transplant and was put on the transplant waiting list while her daughter was in prep, so knows this dilemma all too well. Thanks for joining us, Sally.

01:21 Sally: Thank you.

01:23 Maddie: Sally, to start, you've had troubles with your kidneys for a while now, even before you were diagnosed with kidney disease. Can you tell us a little bit about what life was like before your daughter was born?

01:34 Sally: There was a lot of medical appointments and blood tests, so every year there was, like, reviews to go to see the specialists.

01:45 Maddie: What were you suffering with at that time?

01:47 Sally: I had lupus. Yeah. So it affected my kidney.

01:51 Maddie: And what happened after your daughter was born? When did you know that something was a bit more wrong than what you initially thought?

01:57 Sally: It was like just being tired all the time, having hair loss and arthritis that was, like, rotating. So one day, one morning it would be on one joint, on one knee, and the next day it would be on the other knee, and sometimes it might be on the elbow. So I knew something was not right, but I was too busy to think about going to the doctors to check it out.

It got to a point where husband said, "No, you need to go to the doctors." So, yes, I went to a few GPs and they all told me, it's postnatal depression. You're tired. It took one doctor who noted that the arthritis is not right, doesn't seem right to investigate further.

02:45 Maddie: And what did they find when they investigated further?

02:47 Sally: So they just normally took a general blood test, and then he rang me the next day and he goes, "You have anemia of chronic disease. So what chronic disease do you have?"

I'm like, I don't know, actually. And then he sent me to a hematologist because he thought I might have some cancer or something. And then as soon as I walk into the hematologist's office, one look at me and he goes, "Yeah, you've got lupus."

Because I actually had the classical butterfly rash and none of us picked it up, but it took someone who haven't seen me at all and I walked into the office and he goes, you've got lupus.

03:25 Maddie: And when were you told that you would need a kidney transplant?

03:30 Sally: So when my daughter was in prep, basically, yeah, that I needed a transplant.

03:35 Maddie: And is that because the lupus had affected your kidneys so much?

03:38 Sally: Yes, so the lupus had affected my kidney quite a bit. So they said to me, like, you need a transplant.

03:48 Maddie: And what went through your head when they said that to you?

03:50 Sally: I bawled my eyes out when they told me, of course, because I wasn't expecting that, because I've heard other people live with lupus and things like that, so I didn't expect that.

So obviously, I was at the clinic, I was bawling my eyes out and I was thinking, oh, my daughter is so young and there's so many things I want to do with her, like go travelling and things like that. So that was at that time going, I was brawling my eyes out and I'd go, "I can't do any of these with my daughter..."

04:22 Donovan: Huge shock.

04:22 Sally: It was a very huge shock. Yeah. And then I went home and bawled my eyes out a bit more as well. So it took a while to let that sink in, actually, that I needed a transplant. And then it didn't help that the doctors were saying, "Oh, you will be one of the earliest ones."

You need a transplant. Most people who need a transplant are older. And at that time, when they told me I needed a transplant, I think I was only 30-something, in my early 30s, yeah.

04:51 Maddie: Donovan, I'm sure a lot of people grapple with this idea when they're diagnosed with something, whether that's that they need an organ transplant or it could be something different about how they talk to their children about what they're about to go through.

Where do parents start with having that conversation? Or where should they even begin when they're thinking about that?

05:08 Donovan: Well, I think it's a tricky question and just vary a little bit for each individual person. I think, though, where people often do perhaps make some errors is in not giving information, I think is really important to tell your kids what's going on, how much, and when you do it is a little bit less defined.

But certainly it's good to start the conversation as early as you can. And you can always build on the initial conversation and provide more and more information depending on how your child is receiving that and building on the knowledge that they have, and also the way that your illness develops.

Because as we've heard from Sally's case, sometimes it's really confusing. Your health status changes from week to week, and it's important that you kind of have that ability to kind of have regular conversations with your kids.

06:05 Maddie: I know you said that where parents go wrong is often in not telling them. Is there a wrong way in telling them? Is there somewhere that parents should start or is it just get going, essentially?

06:16 Donovan: Well, I think you can definitely go a little too far too. I think it's important to kind of try to get the right amount of information. And again, we're not in a rush to do it, but it's really important, I think, to encourage parents to actually do that, because that's, I think, where most struggle is knowing when to start or to start at all. And some people try to keep things hidden, and I think that's potentially a problematic approach to take.

06:45 Maddie: How would you recommend parents start? Is it a matter of pointing to something if they're going through treatment at home and starting small?

06:53 Donovan: Yeah. Look, I think that kids actually are very sensitive to what's happening in the family and what's happening to their parents, so they'll often know that something's not okay.

In the same way that Sally's hematologist immediately could see that rash, I think your child would be seeing that too. They'll be seeing a whole lot of different things, and so they're probably a little aware that everything's not okay.

07:19 And so I think starting as soon as you know something is sensible, I think you can just gently open the conversation to say something about how you're feeling or how you're doing or what you're doing about that.

I'm not feeling that great. I'm going to see the doctors. They don't quite know what's going on at the moment. We're going to get some more tests and hopefully I'll know a little bit more, but also being reassuring to the child that they're going to be looked after and that you're going to get good care.

07:54 Maddie: Should you lie at all to your children through that process to reassure them specifically?

07:59 Donovan: I never encourage lying, but I think there is probably some information that's good not to share, so probably more extreme information, kind of catastrophic, worst-case scenario, perhaps type of stuff.

I think the idea here is to share an appropriate level of detail and information that does touch on the most difficult or potentially complicated areas, but you do that in a way that kind of, I suppose, doesn't traumatize your child by sharing too much gory detail.

08:35 Maddie: Sally, you said before your daughter was in prep when you were put on the waiting list, so she was quite young at the time.

08:40 Sally: Yes.

08:42 Maddie: Did you ever question whether or not you would tell her what you were going through?

08:45 Sally: It never came across my mind not to tell her. I think it's really important that I tell my daughter exactly what's going on, because I knew if I was going to have a transplant, I'll be in the hospital and I'll be coming back to the hospital for more blood tests and scans and stuff.

So it's not something, it never crossed my mind not to tell her. And I would need family help as well, so she would know that if I go somewhere and someone else is picking her up from school, so she needs to know why my auntie is picking me up or my grandma's picking me up today instead of mummy. So it never crossed my mind not to tell her anything.

09:25 Maddie: And how did you begin telling her?

09:28 Sally: So we began by telling her that mummy's kidney is not well. Mummy didn't drink enough water, and that also encouraged her to drink water as well. So we started off with that, mummy's kidney is not well.

And mummy has tried a lot of treatment over the years, and it's come to a point where I need a new kidney because my own kidneys are not working. So it came slowly, step by step.

09:57 Maddie: You work in healthcare as well?

09:58 Sally: Yes.

09:58 Maddie: So you're more familiar with human body and treatments and medicine. Did you find that to be a little bit easier to start that conversation because of your background?

10:06 Sally: It was easier because I had that background. But I also found there's a lot of books like these days, there's a lot of human body books. They come in all sorts of different levels. They can start really young, just basic stuff, and they help a lot as well.

And they got images, in the bookshops, if you go to the bookshops now, there's plenty of books on the human bodies. There's models that you can buy. There's toys of the organs you can buy. And all those actually helped as well.

10:34 Maddie: How did your daughter react when you started to tell her what was going on?

10:37 Sally: She was not phased by it all. She was actually quite mature for her age because I think she's seen other people, other parents, like from her friends are sick maybe as well.

So she was not phased at all. And I think it helped that my husband, there's three of us in that conversation, and we always have this conversation at every opportunity that we can, that we feel she can receive that information. And she was like a sponge, really, basically.

11:05 Donovan: The common experience that I've noted in my work is that parents are more often than not quite surprised at how well children do take information about their illness and how much they actually do understand and how quickly they do accept what's happening.

11:22 Sally: And I think when my daughter was prepped, they're very curious, so they actually ask a lot of questions as well about the condition. And it was like, oh, why this and why that? So that actually helped as well.

11:35 Donovan: It helped you?

11:36 Sally: It helped me as well because I myself was still trying to get over the shock that I need a transplant. And then, now that I look back and then I of course, did my own research and then I found out eventually I probably would need a transplant.

It just came earlier than I probably in my course of illness, it probably came earlier than expected, or most people would have a transplant later on. And then I think around that time, I think Selena Gomez was having the same issue, so it kind of makes sense.

She had lupus, and she had a kidney transplant as well. So by the time I did get my transplant, I can use her, like Selena Gomez as an example. Look, she had lupus, and she had a transplant. She didn't have to wait as long as I did because she had a friend who donated it. But there's someone famous who's gone through it. So for her, she can see it. Oh, it can be done. That helped a lot as well.

12:35 Maddie: As you mentioned, kids are curious by nature, and I think a lot of people listening can relate to that as well. Donovan, how do you answer questions that kids might have in an age-appropriate way?

12:47 Donovan: Yeah, again, I think that parents often know their children really well, and they really know what level of understanding, intellectually maybe is reasonable for their kids.

I think, again, providing a reasonable baseline level of information, and then you can always add to that. And as Sally said, curious kids, lots of questions, trying to answer those questions as best you can.

13:11 I think pulling in information from other sources like Sally was able to do is really helpful. There's so much available out there, good literature to support and inform how to have these kind of conversations, and books on everything from organ transplants to terminal diagnoses to family difficulties, the range of different things, and then also leaning into supports of specialist services.

They often do provide support and can provide advice around these things. Having worked in a major cancer hospital in the past, I know that was a focus for a lot of people, was how to communicate information about their health and their prognosis to their children.

13:51 So there are supports available and out there, both in the medical fraternity, but also in the psychiatric one. And your GP is always a good launching pad for those kind of conversations, too.

14:03 Maddie: Sally, while you were on the transplant waiting list, you were still undergoing treatment, you were going through dialysis at the time.

14:08 Sally: Correct.

14:08 Maddie: Can you tell us about how you did dialysis? Because it was a bit different to kind of the standard coming to hospital.

14:16 Sally: Yeah. So I have called peritoneal dialysis so that's when a bag of fluid is put into the abdominal area and left there for a period of time, and then it's drained out.

So there's two types of that. So there's one that's overnight, so the machine, you'll be sleeping next to a machine, and the machine will do that, what we call an exchange, and then there's one that's done during the day.

So a manual one. So I opted for the manual one because I was quite comfortable doing it myself. And we have room at home. I had quite a big bathroom with a big bench space because you need the bench space, so I opted to do that. So I did the dialysis at home every day and did that exchange four times a day.

15:01 Maddie: And you did that for six years?

15:03 Sally: Correct.

15:03 Maddie: Wow. And did you find that doing that at home, even though your daughter was at school at this point, but she was still seeing you do this, did you find that that made it a little bit easier to take her through what you were going through as well?

15:16 Sally: Definitely. So. I was happy to show her my process of doing it, sanitizing my hand, sanitizing the bench and how to open the bags and how to dispose of it and things like that, and how the fluid goes into the abdomen area, because by that time, I had a tube that was inserted surgically.

So I showed her the wound that I need to take care of every day so that she knows what's going on, because we did not know how long I have to wait for the transplant, so I thought she need to know what's going on.

15:51 And she was curious as well at that age. She was curious, how does this work and why does this work? Why going into the abdominal area that will help clear waste from the body? Like, she was curious about all of those.

So that led to other conversations, like chemistry conversations, like you do this by diffusion, that sort of thing? Yeah.

16:10 Maddie: There'll be people listening who might be very sick while they're waiting for their transplant. They could be living in a hospital. This is a huge change for them and oftentimes a huge change for their kids as well. Their life is often thrown up into a bit of disarray, and they can be quite scared for you.

How can parents reassure their children throughout this process if they themselves are also scared about what's going on?

16:32 Donovan: I think it's a big challenge, isn't it? I suppose that what we want to do is to be able to provide the kids with the information about our condition and about our health.

Not hold back too much of that really important information about seriousness of the illness, but also to be providing them with the reassurance that they're going to be okay, they're going to be looked after.

16:55 And I guess the major thing is conveying our faith in the treatment team and in the pathway that we've chosen for ourself in terms of our health care and that we're confident that that is going to help us.

Achieve the best outcome possible and demonstrate that we are able to make good use of the help that's available and access the best resources we can to look after ourselves. So, leaning into family members, other support people, explaining what may happen, including, I think, as Sally said, if you're suddenly called away to hospital, if you have to have a big operation, perhaps even if there's more serious potential outcomes, it's useful to talk about those things and what may happen and what the plan might be in those instances.

17:42 And Sally said, kids are so curious. They do want to know these things. And the more that you can see, the less you have to worry about. The biggest scares are things that we don't know about and things that we haven't seen.

17:59 Maddie: So there's no build-up in a sense.

18:01 Donovan: Yeah, well, that's it. I think that when it's very unexpected, that is what can create a lot of worries and problems. So where we've got an idea that this might happen, most likely it won't. But if it does, you'll be okay.

You'll be looked after, you'll be safe. And in the interim, I'm doing my best, and I'm getting the best help possible, and hopefully we'll get through this.

18:24 Maddie: If a parent is listening whose child may be really struggling with what they're going through, what can they do beyond just giving them those reassurance? What other medical supports can they reach out to?

18:37 Donovan: Well, again, I think that a number of services, specialist services, certainly the transplant service would be one of those. But other specialist services, looking after people with serious and chronic health problems do offer a good amount of support.

It's really important to talk to your clinicians about things. So whether that's your specialist doctor, the specialist nurses looking after you, other members of your health team, but even in the absence of being able to have those conversations with your specialist team.

19:07 Talking to your GPs is good too. Your GP at the end of the day holds a lot of information about your family's well-being and probably is a good resource to be able to think about how to help your children.

If they need specialist help, then they can refer them to the appropriate specialist for further support. And obviously places like the Austin would offer support to families that are struggling in this way.

19:29 Maddie: Sally, did your husband help out in explaining and answering questions to your daughter throughout this process as well?

19:34 Sally: Yes, he did. We were acting as a team, basically.

19:38 Donovan: Tag team.

19:39 Sally: Yeah, tag team. Like, I don't know about other children, but my daughter always delayed bedtime and then the delayed bedtime is like--

19:47 Maddie: That's when the questions came.

19:50 Sally: That's right. We find that it's when my daughter was relaxed and it's bedtime and she wants to delay her bedtime, that's when we have all these conversations and we will be having it in my bed. We're talking about these conversations. So my husband and myself, we will be answering these questions and talking to her about it.

20:07 Donovan: I think it's really containing for a child to know that their parents are working together really well, they're collaborating, they're helping one another that they're on the same page and they have a common and shared idea about what's going on and how they're going to deal with difficulties. So that's really very helpful for kids.

20:27 Sally: I think it's really important that both parents help each other to support the child as well, not just each other.

20:35 Maddie: We're on to the last question already, we're whizzing through this one. Do you have any final bits of advice or tips on talking to children? If you could give the people listening just one piece of advice about how to talk to their child throughout this process, what would it be? Donovan, I'll start with you.

20:51 Donovan: Well, I think your Freudian slip was very apt. You said listen to their child. I think that's important. I think it is about talking, but also about listening. So I think it's a reciprocal thing, with our kids.

I think the most important step is to just start. And I think for many people, that's actually really difficult to imagine talking about something that they're so scared about, that they're so uncertain about.

21:13 But it's really important that they do share some of that information with their kids, because your kid is watching you. Your kid is smarter sometimes than you think and certainly knows there's something going on.

And I think having some information is a lot better than having none. So the first step, just having the conversation, or at least opening up the conversation. And then I think, yes, it's about listening, being thoughtful and answering those questions that are inevitably going to come and if you need it, leaning into the help, saying, "Oh, I don't know that answer at the moment, I'm going to have to go and ask somebody about that."

Then dipping into the media that's available, literature, things like a podcast or something, maybe is helpful in informing what you're going to say.

22:02 Maddie: And Sally?

22:03 Sally: I just think children are more resilient than we give them credit for. And I agree with Donovan, you've really got to start that conversation because they can see what's going on with you. They see that you're not well, and they know, in their instinct that something is wrong with their parents.

So it's very important to start that conversation. And if you don't, they're going to get that information from somewhere else. They will talk to their friends and it goes, "Oh, I think my mummy is not well."

22:31 You don't know what conversation or what information they would get outside, not from you, but from someone else. So it's important to start that conversation, like Donovan said, and give your side of the story and tell them exactly what's going on.

Otherwise they're going to find the information from somewhere else and you do not know how credible that information is.

22:51 Maddie: Or worse, they could think the worst and be stressing about it.

22:55 Sally: That's correct.

22:57 Donovan: Yeah, I think that's often what we tend to do is we imagine the worst-case scenario and so our kids are going to do the same thing. They're going to worry about worst-case scenarios when they don't have good information, when we don't give them that reassurance, where they don't feel comfortable to ask us for information.

Ideally, what you'd want to have is your child to feel very comfortable to come to you and ask you questions and even hard questions about long-term outcomes, about life and death, all that sort of thing.

23:30 When you really want to be the person that is the first one who's able to answer those questions rather than some other person you don't know and who doesn't know your information.

23:39 Sally: Correct, yeah.

23:42 Maddie: I think that's all we have time for today. So thank you both so much for joining me. I'm sure that people who are listening can take more than one thing from this episode. There was a lot of really advice and tips and tricks and tools in this, so thank you so much.

And Sally, thank you so much for joining us and telling us a little bit about your story as well.

23:57 Sally: Thank you.

23:58 Donovan: Thanks so much, cheers.

24:05 Maddie: If you liked today's episode, please share it with your family and friends. And if you haven't done so already, please sign up and join the Organ Donor Registry today. Visit DonateLife.gov.au and help save a life. We've included the link in our show notes to where you can find out more.