Transcript for
Family perspectives on childhood physical illness – part one

Narrator (00:02):

Welcome to the Emerging Minds Podcast.

Bec Edser (00:08):

Hi everyone, my name is Bec Edser, and in this two-part episode, we will be hearing from Kimberley, Brad, and Bec, who are all parents of children who have experienced different chronic physical health conditions. Bec is a parent of two children who experience different health conditions, and Brad is also the Director of the National Workforce Centre for Child Mental Health. So it adds an interesting perspective to this podcast for many children who live with physical health conditions, regular trips to hospital and medical interventions are a fact of life. Unfortunately, these trips and interventions can be quite traumatic for children and their families, and the impacts can stay with them after they’re discharged. I would like to acknowledge Kimberley, Brad and Bec’s expertise as parents, and thank them for taking the time to share their valuable insights into what it is like when your child has a chronic physical condition. Importantly, these insights assisted Emerging Minds to develop our latest e-learning course, Understanding child mental health and chronic physical conditions. If you are interested in this course or any other Emerging Minds content, please visit www.emergingminds.com.au. To begin, we will hear parents, Kimberley, Brad, and Bec describing their children and the physical conditions that they experience.

Kimberley (01:36):

So Mikayla’s a sassy little, a little two-year-old. She enjoys dressing up. She has a fairy tutu and fairy wings that she puts on and runs around, it’s very, very cute, often as paired with gum boots. So her fashion sense is still developing. She likes playing with her, her baby dolls. So she she’s quite maternal, quite often is putting her bubbies to sleep or comforting them. She likes baking and she really loves craft. So she does lots of drawing and lots of creating. And when she was four weeks of age, she was diagnosed with a congenital heart defect, which is T-A-P-V-D or total anomalous pulmonary venous drainage. And it’s basically where the arteries are plumbed into the wrong chambers of her heart. And it means that the clean oxygen that she breathes in mixes with the oxygen that’s already been around her body. And it meant that at 11 weeks of age, she required open heart surgery to have it fixed.

Brad (02:31):

We’ve got two kids. So our youngest one Maddie is now four, but when she was about four or five months old, she had a, initially a seizure that, you know, originally we sort of went, ‘oh, yeah that’s a febrile seizure and they can be quite common and in little kids’. But hers ended up being a bit more complex and kept happening, and some of them were quite complex as well in that they went for a really long time. And so that’s sort of what triggered our engagement with a lot of services. So first one I was actually away interstate, and then the next one I was around for that to happen. So I think with any sort of these situations with kids, you’re always frightened, I think, by what happens to them. And in the moment, I think you sort of get into the zone of what you need to do to get help and support. But yeah, it does over time, I think, because of the nature of it, sort of one-off, I think we were like, ‘oh yeah, that’s just expected, I guess in a lot of children, that’s what happens’. But I think because hers kept going and were quite long and severe, you know, I think, ‘why’s this happening a bit more?’, and seems a bit atypical to what normally would happen with these situations.

Bec (03:28):

My eldest who’s just turned six has epilepsy, which was diagnosed when she was 10 months old. And my son who’s almost four was born with airway issues, which required him to be on oxygen for 12 months and now suffers from fairly severe asthma because of it as well. She was 10 months old at the time, so even now at six doesn’t really understand her condition well. So she was 10 months old having seizures at childcare, and rushed the hospital from childcare and was diagnosed not long after. And she still has seizures approximately every six months or so because the medication she’s on is weight-based. So as she’s still growing quite quickly and we have to adjust it every so often. And when we do, we have breakthrough seizures.

Kimberley (04:22):

Mikayla was diagnosed at four weeks of age, but her symptoms started presenting when she was about 48 hours old. So I’d been hospitalised prior to having Mikayla, I was a high risk pregnancy. My first child, so Mikayla’s brother Thomas was born eight weeks prem. So I was put on bedrest for six weeks in hospital prior to her delivery. In the lead up to her diagnosis, I remember the midwife had taken her out of my room to take her into the nursery, to do her checks, and her saturation levels had been quite low and yeah, they had taken her up for another scan and I remember asking the midwife on the way back down. So I went up to meet the midwife from getting the scan and I asked her how it went and she said, ‘oh, you need to ask the paediatrician’, which to me was a red flag.

Bec (05:09):

He was born with tracheobronchomalacia, which is narrowing of the airways. Oxygen helped him for the first 12 months until his airways grew stronger. And now he has fairly severe asthma, which takes two or three different medications to help in some way. But he still gets his symptoms when he runs around and plays outside and does everything that a normal four-year-old does. So we’re often reminding him, ‘no, you need to stop and slow down and you can’t do this’. And then he gets upset, which makes it even worse sometimes.

Bec Edser (05:55):

Listening to the stories of how these parents first became aware of the conditions that their children were experiencing, it really struck me how distressing this can be for parents and how much there is for a parent to be thinking of practically to manage their child’s physical health as well as considering how to support their development and wellbeing through periods where they are unwell. We will now hear Brad, Bec and Kimberley talk about what it can be like for a parent and child experiencing symptoms and undergoing treatment or medical procedures.

Brad (06:29):

So she’s four or five months old, so I think what we probably noticed, was probably energy-wise, I think, it’s quite draining. And you know, I think as she got a bit older, we noticed some, you know, days after she would be a little bit, you know, exhausted developmentally sort of, you know, she would be crawling or walking or things like that as well when she was a bit older, for a few days. And then I think probably other bit for, or us was as I think for all parents is they’re still learning to sleep and settle and all those sorts of things. So she was a terrible sleeper the best of times, so that was something we were sort of working on quite a bit, but we noticed every time this happened, you’d sort of go back to really disrupted routines and I think just a disruption to that routine that you start to establish meant that our efforts that can be quite exhausting as well with trying to sort of help her learn to sleep and things like that as well, you know. I think as parents we’re back to that again and so that persisted for months and months, so I think we found it really hard just to get to a rhythm or routine sometimes, particularly when they, I think the first, probably six to 12 months that sort of happened probably every one to two months.

Brad (07:33):

I think probably where the stress does sit more sits in probably decision-making and everyday life sort of stuff. Like if we want to go somewhere, we ask ourselves, ‘oh, are we in proximity to paramedic who could help if there’s an emergency’. So, you know, we wouldn’t choose to go early days anyway, when it was happening more frequently, you sort of have to make a decision to go, ‘yeah, we’re not gonna go away to this place because might not have the care that we need’. So I think some of those sorts of decisions, but I think you just have to be more vigilant as you would, you know, things like supervision, being in water, all those sorts of things you have to sort of just be conscious of. I think around the nature of it, I guess sort of a conscious of what might mean the experience meant for her as a baby and a toddler.

Brad (08:11):

And you know, I think what we sort of viewed as has to happen and where we talk about it is, you know, with health professionals and you know, it can be painful, it can be scary, but we talk about it as a positive they’re there to help there. And so that sort of is understood and I think that’s what helped process it for her. So that’s probably the big impact, but I think for us as parents, I think you’re probably already exhausted and burnt out when you’ve got little kids, anyway. I mean, then this is just another layer to that, that just added to that and of that stress and anxiety thing. I think all parents hold, but just another extra bit to keep on top of that.

Bec (08:43):

I got a phone call from her daycare one day saying you need to meet us at the hospital. We’re taking your daughter there by ambulance, not exactly the nicest phone call to get, but so that was a very quick hour, ringing people to let them know and get organised to get people to the hospital for her and all of that. And then walking in, seeing her in a resus bed, surrounded by people was a bit daunting. And then yeah, had two nights in hospital filled with doctors run in and out and all these different people. So it was quite overwhelming, especially when the doctors changed every day. You never know who was going to come in, even though they were all there for the same reason. A couple of visits later after she had to go in for an MRI, which at 10 months old means putting them under general anaesthetic, because they have to stay still for 45 minutes.

Bec (09:47):

And then when we were waiting for her to wake up, the doctor actually called us and said, ‘we need to talk’. And she previously said, ‘we will only need to talk if there’s something wrong.’ So automatically we knew something wasn’t right. So there was a 15 minutes or so between the phone call and seeing her where we’re like what’s going on and then she just bombarded us with all this information and then said continue with whatever meds she’s on, because that already put her on medication and everything and then left us to go home bit of a shock and took time to process. And then just having to make, do with what we knew until we saw her again, which wasn’t gonna be to the next appointment in three months time or so. And it was a lot of looking up stuff at home as well to learn really, because we didn’t really know at that stage what services were available to us or anything as well. So it was a lot of self-learning involved. There’s just not that much out there to help.

Kimberley (10:56):

The paediatrician I remember had called the nursery to see whether Marcus was going to be down at the hospital that day. To me, the, that was a red flag and a warning sign that there was something not right. The paediatrician had been called away by that stage to another hospital. So it was a bit of a waiting game, which was an agonising wait, because we knew that something wasn’t right. And then when he did get back to the hospital, he informed us that they had noticed that Mikayla had what they thought was a murmur. So they’d send her off for a scan and they had checked with the cardiology team and she’d been diagnosed with her heart condition. It was quite terrifying. And I think that being in hospital for so long had been tougher anyway, but the diagnosis kind of broke me. And I think the process that followed that all happened quite quickly and was very, very traumatic.

Kimberley (11:42):

So Mikayla had surgery at 11 weeks and we had to go over to the Children’s Hospital in Melbourne and as a family, we made the decision to drive over there because it meant that we had access to a car, we had a little bit more flexibility with what we could do with our time. Marcus’s parents had come down to help us care for Thomas. After surgery, we were discharged and we spent two, I think we spent two nights in Melbourne. We had to do a follow-up like a checkup immediately after discharge. And then we came back to Adelaide. Once we were back in Adelaide, we had to catch up with the cardiology team here in Adelaide within 24 hours. And then I can’t remember the frequency of visits, but we saw sort of went every couple of weeks to start with.

Kimberley (12:20):

And then it dropped out to a few months. And now we’re fortunately at a phase where we don’t have to go for another 12 months. So we’ve, we’ve had a two-year gap and I’m hopeful that that’s how it remains. In a way, we’re fortunate that her diagnosis was where she was so little because for her, the impact has been minimised for us as parents emotionally, it has been exhausting. And obviously it’s affected us a lot differently than what it has her. For her, she obviously has a very impressive scar or a set of scars. And I suppose from our perspective, we’re reminded of it daily when we’re cuddling her, you know, you can see where she’s had the, the central lining and when we change her or bathe her, we can see her, her scar from her surgery. I don’t think she’s made the connection of what that is.

Kimberley (13:04):

She is still only two. You know, she understands so much more than what she can communicate, but for a while she hated anything being on her face. She didn’t like her face being touched, trying to medicate her now is almost impossible. And that becomes a very, very stressful event for us. So just as an example, she’s, I think she’s getting her molars at the moment. She complains that her mouth hurts and that her ear hurts and trying to get a dose of paracetamol into her is really, really stressful to the point where more often than not, I give up because it’s just too hard. It’s too traumatising for me and for her. And yeah, she didn’t like things on her face, so trying to clean her face or if anyone, you know, went towards her face, she wasn’t overly happy with that, but that’s probably been the extent of it that we can see. It will be interesting to see how she goes with future reviews. So next year, once she’s three she’ll, she’ll have another review with the cardiologist and we’ll need to go through all the scans again. So I think that that’ll be a, a different challenge because she’s a little bit older.

Bec (13:59):

It was a big shock and a lot of wondering where we’re gonna store all this equipment and how are we going to manage this with a two-year-old as well? And then thinking like, ‘is this gonna get serious all of a sudden and what are we gonna do then?’. He had to be on oxygen 24 hours a day, which meant he had a tube in his nose constantly and that’s not exactly short, so, and then we had to, every time we went out, we had to change to a little portable tank, which we had to carry around as well as all the normal baby stuff. And then at home we had big oxygen tanks that we had to wheel around the house to every time we had to change rooms and also meant a lot of the time, we just tried to stay in one section of the house as well, which got a bit boring sometimes.

Bec (15:01):

And just trying to adjust to having all this big equipment in the house and trying to work out where we had to store three or four oxygen tanks at a time because being 24/7 at that stage that we went through a lot and they prefer not to come out that often. So we had up to a month’s supply of oxygen, sitting around our house as well, trying to keep a two-year-old away from all this interesting stuff as well. And then you had the same supply of all the portable tanks as well, and because then we had, yeah, trying to remember to order the suppliers that we needed as well and try and work out how many we needed, because you could only order once a month from the hospital as well. So in the start, sometimes we ran out earlier and had to beg them to give us more because we didn’t know that he would get a cold and needed extra tube changes and everything and as well, so.

Bec Edser (16:06):

The mental overload and physical exhaustion described by Brad, Kimberley and Bec really emphasised to me the significant impacts that families experience from the necessary cons provision of both illness-related care and emotional support to their child. Parents Bec, Brad and Kimberley all highlight the importance of taking care of their own wellbeing while they are caring for a child with a chronic physical condition.

Bec (16:34):

I’d been in the hospital with him for probably so seven days at that stage. And that was the longest I’d been away from my daughter as well. But like as a mum, yeah, you don’t wanna leave your son either. So yeah, sometimes you, they just need to push really, especially mothers we all know that they put everything last for themselves. I think sometimes people just need to push the mothers more and force them really to do things for themselves. The nurses in the baby ward, they were really good, and there was some more than others that really actually pushed the self-care of the parents as well. And at one stage told me to go home, like literally shoved me out the door. She’s like, ‘no, you need time for yourself’. And then in the respiratory area, their main nurse was really good as well when she actually pointed us in direction of a few more services that could help and was all over Centrelink help and like the helpful things but yeah, then some of the doctors again were, think they know it all and are a bit more dismissive of everything and try and rush you in and out.

Brad (17:57):

But I think, you know, we do want to just do all the other things that are important for us as well. So I think that’s where it was really important I think for kids as well, not to, I think we sort of view in the moment that’s sort of when it happens, but then we go back to life as normal and in that sort of context, and as I said in the early childhood, that’s sort of pretty tricky anyway, because your routines change and everything changes so quickly anyway. So I think for us that was sort of probably the hardest part was just the exhaustion. I think that this all creates, I think you just sort of feel as a parent, these sorts of things you feel drained I think probably the best of terms, but then these sorts of things, just add that emotional layer of stress that I guess sort of takes away the energy you want to have as a parent for quite some time.

Brad (18:35):

And I think that was probably the bit we grieve a bit I think probably more than anything from this whole sort of process is we knew what we wanted to be as parents and when this wasn’t happening, that sort of what we could, but it did sort of just chip away at little bits of energy that sort of over time meant that you sort of burnt out quite a lot more than you normally would be I think with this stuff. It’s something I think we struggled with a bit and I think I hear from a lot of the parents as well, who have children with, you know, health challenges or disabilities, just what I call pretty much parental burnout I think which is, you know, that idea I think of parents being burnt out at the best of times. I think a lot of the time without necessarily having, you know, lots and lots of social networks and supports.

Brad (19:14):

And I think a lot of parents suspect to sort of say the practical help and things like that as well, that we don’t tend to have access to as much today. Because you know, our parents are working all those sorts of things as well. So I think that’s something that a lot of parents hold just that sheer exhaustion, I think that sometimes is something that would be probably good to label for parents or be, you know, just say probably exhausted and, and just actually acknowledge that, is helpful. And I think particularly in the context of other sort of expectations that are on parents as well, I think it’s just one of those things of it’s helpful for people to, I guess, know that that’s sort of, how do we help is to alleviate, I guess, some of that burnout and practical help that I think would be often the most useful sort of thing of, you know, I think what a lot of parents need, you know, help manage the stress.

Brad (19:57):

I think, you know, I think a lot of people can sometimes offer emotional support but not practical support or the other way around that doesn’t seem to be good balance. And it’s hard, I think as parents in the middle of it to ask for help from anyone around them as well, like I think that’s something we don’t have a tendency to, you know, go, we just need help. So for some of those natural supports that exist is rather than asking what can I do to help, sometimes that’s helpful, but sometimes it’s just helping, and doing help because it’s sort of when you ask, ‘what can I do to help?’ you sort of don’t know, because we just have to manage it on our own anyway. Like it’s sort of hard to label what’s helpful. So sometimes it is just finding things that people can do practically that, wrap around the family a bit more proactively without this even asking sometimes it’s quite helpful too.

Kimberley (20:36):

I remember when we did go into the special care nurses, we’d been in there for three weeks and by the third week I was done, I’d been, so I was so tired of being in there and you know, having to go home and try and spend quality time with Thomas and then coming back down to the hospital. And I remember the paediatrician came in one day and he did his, his observations over Mikayla. And whenever the paediatrician breezed in, the, the special care nursery, he was never in there for a, a huge amount of time. So he’d do a quick check over the babies and then pop back later if there was anything urgent or he’d pop in the next day. But I remember on this particular day he said, she, she looks okay still no clearer to the diagnosis, but that he was gonna pop back in tomorrow.

Kimberley (21:16):

And I don’t remember saying anything, but I’m going to assume that I gave him a look because he came back and asked how I was going mentally and it was probably the first time that anyone had asked how I was doing. So I know that the midwives had picked up on how I had been coping previously, in particular. I remember one midwife who, she gave me a hug. She said, ‘can I give you a hug?’ and I burst into tears and then she said, Kimberley, you’re exhausted. You need to go and rest. And she tucked me into my bed. I was still an inpatient at the time. She tucked me into bed, went and got a hot blanket and wrapped that around me as well and kind of took over as a parent. But I guess, you know, she, she recognised that I needed support and she gave it to me. And I think that when the paediatrician asked how I was going, he was aware obviously that, that I was a little bit wobbly. And I think it’s really important that somebody checks on how parents are going, because the focus obviously is always on the children and the, you know, their condition and their symptoms, but not necessarily on, on asking how the parents are coping or what support the parents need.

Bec Edser (22:22):

Bec, Kimberley and Brad have reflected on the exhaustion and burnout. They have experienced caring for their children when they have been unwell. When practitioners have recognised the importance of necessary practical and emotional supports for the caregivers of the child, it is obviously made such a difference to these families. In part one of this podcast, we have heard from parents about what it is like when your child has a chronic physical health condition that requires medical intervention or complex treatment and care. And also about the importance of supporting the wellbeing of a child’s caregivers and impacts on the families. Stay tuned for part two, where Brad, Bec and Kimberley will discuss ways that practitioners can support the wellbeing of children who live with a chronic physical health condition, as well as further describing family focused practices. I would like to thank the parents who have so generously shared their time and experiences with us today. You can learn more about supporting children, living with chronic physical conditions in Emerging Minds, e-learning course, Understanding child mental health and chronic physical conditions at www.emergingminds.com.au. Thank you for joining us.

Narrator (23:44):

Visit our website 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.