Transcript for
Family perspectives on childhood physical illness – part two

Narrator (00:03):

Welcome to the Emerging Minds Podcast.

Bec Edser (00:08):

Welcome everyone. My name is Bec Edser from Emerging Minds. This is the second episode of a two-part podcast, featuring a collection of parents talking about their children who have all experienced different chronic physical health conditions. I would like to acknowledge their expertise as parents and thank them for taking the time to share their valuable insights with us. If you haven’t already, please listen to part one of this podcast where we heard from Bec, Brad and Kimberley about what it is like when your child has a, a chronic physical health condition that requires medical intervention or complex treatment and care. In this episode, you’ll hear about ways that practitioners can support the wellbeing of children who live with a chronic physical health condition, as well as the importance of family focused practices. In this context. Let’s continue now hearing from Bec, Kimberley, and Brad, about their experiences of accessing services and treatment to support their children and describing the care that their children and families received from a range of practitioners.

Bec (01:17):

They have a lot more help and services available for his condition, which is good. They’ve been able to link us into a lot more different services to help him, but then at the same time, they also refer back to just a general GP for a lot of things. So there’s been quite a few mixed messages of one person will say this, and another one will say this and yeah, try to work out who would be the better person to listen to as well. So one night we were rushed into a resus bay for him and the doctors just turned off all their computers and put up kid’s TV shows on their screens instead of all their work and just worked around that as well, just so they could distract him, which was good, especially when that was one of the main things that would help him at that, what stage was to just calm him down.

Bec (02:16):

So that worked. So it’s been quite a few times with my son where they treat you like you know nothing at all and where you sit there and think, ‘no, I live with this child 24/7. I’ve been dealing with these same issues for four years. I know what I’m talking about, especially when the kids can’t talk for themselves. It would be good if they could remember that parents do know best and just to respect that and to acknowledge it, I’m sure they’ve had the training, but the parents live with the child. They know what’s normal. And if they say that something’s not normal, then like to listen to that. Ambulance people have always been fantastic, especially when you’ve called them out three times or four times within a three-week period.

Kimberley (03:24):

So I think because we’d, we’d spent so much time in the hospital, so we’d been there for eight weeks, with Thomas when he was first born, and I’d been in hospital two weeks before that. So we’d already started developing rapport with the midwifes anyway, and we went back to have Mikayla, it was kind of like being back with family. Again, the midwives, midwives are such a special group of people. They have the most endless amount of empathy and understanding, and their patience is phenomenal. I think that being back with the group of women that we’d, you know, that we’d spent so much time with already was a little bit reassuring. We had developed trust so we, you know, we trusted that they were doing the right thing by us and by our children, and they were super, super supportive.

Kimberley (04:06):

So the midwives giving us the information that we asked for was really helpful, but I think just their, the fact that they care so much about their patients is, is key to being able to do such a good job.  So I think some education on what to expect when changing between hospitals would be really beneficial. It would’ve prepared me for what to expect when we did change hospitals. I know some processes can’t be changed. I know that when the teams would come around of a morning time, quite often, there’d be different faces and different people learning. And I, I understand that’s how they learn, but as a parent of a newborn that’s just been diagnosed, it was quite, quite confronting. And just not overly comfortable. Our cardiologist is phenomenal. He explains things very, very clearly that are very easy to understand.

Kimberley (04:55):

He was only too happy to give us information as, as we asked for it. And I think his ability to relate to us as a family, he even spoke with Thomas. I was concerned about whether they impacted him and he very, very gently broke it all down and went over Thomas for us, which gave us a, a little bit of reassurance, but I think just the, the open, approach and being able to break down the information so that it was quite easy to digest was, was really, really helpful. I remember the cardiologist telling us, at our first and our second reviews that it had almost been like textbook perfect. Everything was, had gone really, really well, and I guess I found his, his positive approach really quite reassuring. Their cardiology nurses are also really, really approachable. And that, I guess, as a parent, made it, made it easier to ask questions, and to, to raise things if we weren’t sure of, because we knew that they were only too happy to help us.

Kimberley (05:54):

And I think that’s really important when you’re dealing with, you know, a, a significant diagnosis is as parents, we need to be able to ask questions that we’re not sure about and get some clarity, so that we can deal with our own stresses and concerns.  And I think, yeah, as a unit, the cardiology team did that really, really well. But I think from a practitioner’s perspective, talking to us about the support that’s available and really highlighting where we could get support if we needed it, it was done initially. I don’t think it was done at follow-up and that probably would’ve been helpful. So I think being prepared to give more information if a parent is after it is really important, because it’s that information that gives us, I guess, enough information to make our own decision on, you know, how risky something is and, you know, to prepare ourselves, both for the longer term recovery and what to expect immediately after diagnosis. I think being open and honest and just maintaining that approachability is really, really important for families. For us, I mean, everybody’s journey’s different, but for us, the more information we had, the more, the more comfortable we felt what was comfortable as we could be knowing that Mikayla was going for open heart surgery. So I think the more information you give to a family, if they want it, the, the better it is for the family.

Brad (07:16):

I think there’s different sort of groups we had contact with. And I think most of the time it was all, you know, I think fairly supportive. I remember sort of paramedics, they’d come into your house when, you know it’s probably its worst, when you’ve got your young kids and then,   think they just communicated like people, I think they sort of felt pretty casual from a relationship perspective. You felt like comfortable with them. You know, I think that calmness, I think they had, they didn’t escalate in a fairly stressful situation hospitals. So I think in the emergency room, I think what we found really helpful, I think just that kindness, I think an empathy, I think for the moment I know’s sort of something you always pick up on is just someone who goes, ‘yeah, this is tricky’.

Brad (07:56):

And that’s all it takes is just someone to say that. And we found that fairly consistent most of the time that that was a really good experience. And then I think the other bits was ones that would, you know, health professionals that would ask a bit more about it, so they could make decisions around you know, like I mentioned before, but, you know, if this has happened before, what would help us to keep her calm or what would be the way to do this?  So getting advice from us around, you know, this has happened before, what would be a way to put in injection or how do we keep her calm, in those sort of situations, some of those, if that was asked, I think sometimes it was sometimes it wasn’t, but that sort of helps I think, just to make it from our end, I guess, because we witnessed it and been there every time that sort of stuff is things that we can provide advice on to make it easier for them as well.

Brad (08:36):

So I think, you know, they’re pretty unusual circumstances, kids get exposed to, and you know, having things attached to your head and all those sorts of things that aren’t necessarily normal experiences. But you know, I remember the different professionals say in children’s services, you know, tend to have puppets and all these sorts of things to try and like I said, distract from what’s happening around them and engage them in different ways. And I think that’s sort of where we found, that authentic engagement you can sort of tell, I think, when a professional just engages with children as if they’re people too and, you know, have their preferences. I think that’s probably what you do notice around some professionals act in a way that they perceive a child needs.

Brad (09:14):

Our kids tend to warm to people who are just natural, authentic, and don’t try too hard, I think is probably how I would say they tend to get a little bit standoffish, if someone tries to be really, you know, kid-like, where if they sort of engage warmly, but can sometimes probably connect more with parents and then gradually bring children into that sort of conversation that always tended to work for our kids. But I know other kids also like that real playful, quick engagement. So when they’re chronic or more persistent issues that keep happening, it would be helpful, I think, to have some of those tools just to, I think help kids understand what’s happening, but not just the child that’s experiencing it, but you know, siblings or others around them that might witness it as well. Yeah, I think probably a majority of the support I think would be useful is just, you know, how to engage and support the whole family and make sense of what’s happened and help children make sense of what’s happened. I think that sometimes is missing.

Bec (10:06):

Sometimes you wish they could schedule things in a different way. Like especially how a three-year-old’s got it fast from seven o’clock in the morning and doesn’t get seen till four o’clock in the afternoon. That can make it hard, but they try and do their best with what they can. So she hasn’t seen the machines because she gets put under in a different room first. And so mostly all her treatment just involves having a medication at night that she’s aware of the next appointment, whenever that will be, will be the tricky one for her, because she’s now of an age where they don’t put her under for the MRIs. So as a wait and see for us. So the last couple of MRIs that we’ve been to that’ve had a supply of iPads and distractions readily available. So that’s been really helpful, especially comes time to putting the gas mask on and the last time too, they actually took all the flavours out to her and let her choose beforehand.

Bec (11:22):

Or they took her into the gas room so that helped a bit. So because they’re yearly, it’s been different experiences every time. Because as she grows older, it’s been a year since the last one’s like, what are we gonna expect now? But so they’ve been quite helpful and knowledgeable in what distracts kids. So they don’t often explain it, but they give us the stuff to read. So the first few times it was a lot of playing stuff by ear and then just learning for the next time as to what worked that time and trying just to make it work again.

Bec Edser (12:05):

What really stood out to me when listening to Kimberley, Brad and Bec’s descriptions of the practitioners and services they have encountered is the importance of ensuring a child’s caregiver is given enough information so they feel empowered to confidently care for their child experiencing the condition, but also that it is so important for practitioners to ensure that caregiver’s intuition and expertise about their child are heard to enable the most supportive treatment and care for that child. For many children who live with a chronic physical health condition, regular appointments, trips to hospital and medical interventions become a fact of life. Unfortunately, these trips and interventions can be traumatic for children and their families and the impacts can stay with them after they’re discharged, taking a trauma-informed approach can be helpful when working with all children and parents to minimise the impact that traumatic medical procedures and treatments can have on children and family members.

Brad (13:07):

You know, I think in the moment probably there was some fear and the restraint and stuff like that, that happens with all the, probably not the actual health issue in itself, but the actual testing and all those sorts of things that happen afterwards. But over time I think whether it’s a good or a bad thing, but she got used to it as well. Like I think things she didn’t like was that idea of, you know, having to be held for, you know, getting injections and all these other tests. I don’t think any child likes to be restrained in that sort of way to the point where as a toddler, to the surprise, I think of a lot of emergency rooms and things like that would actually I think, seem to know that to not be restrained, I just do what needs to be done.

Brad (13:45):

I remember one situation is, a paediatrician in the emergency room was sort of saying, oh, we need to restrain her so we can get, I think it was cannula or something like that anyway. But I think was like, oh no, no, just ask her and she’ll hold that around for you. And, and she did. And he sort of was not sure that wouldn’t be what normal kids do, but because I think she’d been so used to it, she did just go, and you know, we just go, ‘ow’ as it was happening, like express some pain, but like know it has to be done. So I think it’s disappointing a child has to learn that’s that, that, they get to that routine of that sort of process happening to them.

Kimberley (14:20):

I think we probably got the diagnosis around three or four o’clock from memory. By six o’clock we were in the ambulance, being whisked away to a different hospital. And I think the best, the best description that I can get, that I can give is like being plucked out by a skill tester, and dropped from one hospital into another hospital. I remember feeling quite scared and overwhelmed in the ambulance. I remember asking the, the lady that was with us for the transfer. I remember asking her a couple of questions and her answers were quite short. You know, we’d been, we’d spend four weeks in a hospital where Mikayla had wires and cords hooked up to her and the alarms would go off and we knew what those alarms meant. Being in an ambulance with different and alarms was different. And she didn’t really wanna go into the details of what the alarms meant or, you know, to, to describe what the process was gonna be like.

Kimberley (15:09):

So I struggled with that a lot. When we got to the new hospital, there were lots of new people to meet and that were taking over Mikayla and that was quite confronting as well. And quite invasive, you know, she was four weeks old. She was still a new newborn and to have big teams of people looking at her, doing her orbs, we were then put into a different ward, which was lower acuity where we’d gone from being in a special care nursery with, you know, four or six other babies at most to, into a ward where we were in our own room, relatively unsupervised, so we still had the alarms, but there wasn’t a midwife around all the time. That was quite confronting as well and not, not what I’d expected.

Bec (15:50):

He was only six weeks old at the time.  It was at his first lot of vaccinations. He started to aspirate on when the oral vaccine that was given and completely scared the GP that was giving it. And so she rushed, rushed us back into her office and said, I’m rushing this referral for you to see the hospital. So, and then within a few weeks we were down at the hospital, they you’re gonna be here for at least five days while we run all these tests. And the five days turned into 10 and extra tests were added and you gotta be crazy. And then they said, no, you’re not allowed to breastfeed anymore. It’s too dangerous for him. He needs to go straight onto a nasal feeding. And yeah, just a lot of sudden changes to both of us for, especially for a six-week-old was quite crazy. Getting poked and prodded and everything can be a bit daunting for anyone let alone a six-week-old, and he doesn’t like tubes or anything near his nose. So I think that scarred him a bit. I think all the constant appointments that she needs and the constant MRIs that she needed to start with, that’s put her off hospitals a bit. So makes it harder every time now that she’s got a hospital appointment, you have to like bribe her and drag her sometimes kicking and screaming and like, especially the MRIs because she’s hungry as well because she’s not allowed to eat.

Bec Edser (17:45):

Listening back to these parents’ descriptions of sometimes distressing experiences of sudden changes and not knowing what to expect for their children and themselves, it’s apparent that the necessity of responding to the present physical condition seems to be prioritised over the child and their family’s wellbeing and mental health. It has me wondering what opportunities the teams of practitioners providing acute care might have had to make a difference to the wellbeing of these children and their parents while also attending to their critical care needs. Siblings of children with a chronic physical condition will have different responses to what their unwell sibling is experiencing. The parents I spoke with all have other children in their families who don’t experience physical health conditions. And describe to me some of the impacts and responses they have notice in their children.

Brad (18:42):

He didn’t witness really any at all. He did get to come to the hospital with us. So I think what for him, they tend to be pretty pragmatic about it. So I think there’s a bit of almost enjoyment, like, you know, I remember sort of them sitting in the emergency room in a bed together and having a big laugh at about things and just playing. So I think in some ways having them together in some of those moments, has helped her. I think for her experience, she doesn’t remember what happens, but she knows she’s in a different spot. So him was just a, ‘oh well we’re in a different place. So we’ll just keep playing here’, that sort of thing.  So I think everyone did tend to look at treating and managing the issue that was presenting. And that was the important part.

Brad (19:25):

I think what often, sometimes was missing was that, you know, what’s this mean for the whole family and what can we do, obviously to wrap around supporting her. But I think at the same time is for us, I think we probably, as I said before wasn’t exposure necessarily other children, but imagine for other families that would, where that did happen, there might be some tools that would’ve been useful just to manage what that might mean for the sibling as well, if they were exposed to that and we were fairly proactive, I think at sort of keeping that communication open and helping him understand what was happening. But I don’t think that was necessarily something that was on offer in services. So some of those sorts of things I think would be useful just to have access to some of that support and information from professionals.

Brad (20:07):

I do remember he witnessed that was part of it. They’re both in the bath together. So I think in the moment of getting it resolved and those sorts of things, he was sort of watching and we sort of talking to him about what’s happening. I remember sort of the next day overhearing him being quite curious and going to have a chat with her going on, ‘what was it like, what did you, could you hear me? Could you see anything?’ Those sort of things. So, so I think there’s an element of interest just from a curiosity perspective, which is perfectly fine. I think he knew sort of what was all happening, because we kept talking to him about what was happening when it was happening in the past. And I think that’s something that we were pretty conscious of in, in the moment in the crisis, you sort of do have a lens on, we’ve got this immediate thing happening that we need to manage.

Brad (20:49):

But I think alongside of that, there was still an element of what’s happening for him. Where is he? Obviously a lot of the times he was asleep in bed, but I think he even then, his sister being in hospital for three or four days with his mum and you know, we get to go visit. So there’s lots of explanation we had to sort of provide around what happened and why that was happening. But I think that seemed to be enough for him to just go like, ‘this is just what’s happening’.

Bec (21:11):

Luckily my youngest is still young enough to have no idea of what goes on except that they take medication and she wants it too, but we’ve had to call ambulances out son many times and that freaks my daughter out, my eldest daughter out quite a lot. And she’s a bit more aware and because each time it means that mum goes as well. And often she doesn’t know if it’s for mummy or for the, or for her brother and just that are going away. And so she freaks out and just needs extra support at home to get through it all and also makes it harder knowing that she’s going to freak out as well as having to pay all the attention to you. The one that needs it as well so, because I know she’ll just only settle for me. It also means making sure we’ve got a full battery, phone battery at the hospital so that she can call us and so that she can reassure herself that everything’s okay.

Bec (22:21):

Because if she can’t contact us, then that makes it even worse. And sometimes if I’m home alone, it, you kind of just sit there and think how long can I push this out without calling an ambulance, just to try and make things as easy as possible for everyone because then I’ve gotta think about how long it’s gonna take for some other support to get there for the other kids. And just the logistics of needing to supervise three kids and one adult in two different places is not always easy as well. So there’s been a few times where he probably hasn’t, you would think, yeah, he probably could really do with a trip to hospital, but we are gonna do our best at home because logistically we can’t do it all and because you can’t always just drag two extra kids along into hospitals as well and everything. So because they’ve always known that I’ve got a husband, a lot of that information gets missed out because they automatically assume that you’ve got a husband with you or at home that they’re always there to support you, which isn’t the case when they’re off working and everything because he doesn’t work. Even though he works in the city, it’s still an hour away before he could get to help me.

Kimberley (23:52):

Within the first day that we were, had moved hospitals, we were connected with the, the cardiology nurses.  And they provided us with a, a book called Patch the Brave Heartline and as Teddy bear of Patch the Brave Heartline. And that is a story that I guess it covers off the different strengths that patch has as a result of being a heart baby or a heart child or Heartline in his case. And we found that really beneficial in explaining to Thomas what to expect when Mikayla was having surgery. So we didn’t wanna overwhelm him. Even now he actually asked last night, what, what happened to Mikayla’s heart and how did it get fixed? But he knew at the time that Mikayla’s heart was broken, that it wasn’t quite right and that the doctors were going to fix it. So having that storybook and that’s something that I believe Heart Kids provide was really helpful.

Kimberley (24:39):

He called me off guard one day where I, he said something about being a big boy. And I was like, oh, you know, what do you like that? And he said, oh, I became a big boy in Melbourne. And I realised that the impact on him had been a little more significant than what we’d probably recognised. I have noticed that he has a phenomenal level of empathy for a four-year-old. He has a huge heart. He cares so much for other people, and I can only assume that that’s in part or somehow being contributed to, by our experience. When you, we ask him where he wants to be, when he grows up, he says a doctor for children, which is adorable. So I guess from that side of things, I think he’s been aware that there’s something significant going on, potentially he doesn’t understand the full extent of it.

Kimberley (25:22):

And while he’s four, that’s okay. When we’ve had appointments, we haven’t wanted to drag along, no child should be dragged to hospital over and over again. And the appointments are, you know, so frequent. Sometimes you have no choice, but to bring them along, unless you’re happy leaving them with family and friends, but even that’s a bit of a challenge because you sort of feel like you’re trading off time with one child to be with another child. So that probably affects us more as parents and children, so overall he’s been incredibly resilient and we are super, super proud of, of how well he’s gone. I think being aware of, just supports available to help families and siblings is probably really important, and the more tailored or the more specific they are to the condition, the probably the more effective they will be. And I think having the treatment team that we happy to engage with Thomas was really helpful as well. Because it meant he didn’t have to fear it, I think sometimes if we’re not sure of what’s coming or we don’t know who we’re dealing with, that can cause a little bit of anxiety. So having a cardiologist who was happy to talk to Thomas and to go over Thomas personally was really beneficial. And I think that helped Thomas as well. So being able to relate back to the kids is probably really important.

Bec Edser (26:36):

Through hearing these experiences of siblings of children who have experienced chronic physical conditions, it’s apparent the impact that practitioners and services can have for families with more than one child through recognising the importance of age-appropriate communication and supporting children with making sense of what’s happening for themselves or their sibling. In this podcast, we have heard from parents about what it has been like for their families when a child is affected by a chronic physical condition. Once again, we would like to thank Bec, Kimberley and Brad for so generously sharing the insights and expertise they have gained through the experience of having a child with a chronic physical condition. Remember, if you are interested in our Understanding child mental health and chronic physical conditions e-learning course or any of our resources, please visit our website at www.emergingminds.com.au. Thank you for joining us today.

Narrator (27:39):

Visit our website at www.emergingminds.com.au to access a range of resources to assist your practice. Brought to you by the National Workforce Centre for Child Mental Health, led by Emerging Minds. The National Workforce Centre for Child Mental Health is funded by the Australian government Department of Health, under the National Support for Child and Youth Mental Health Program.