“life should not be a struggle when you are a few hours old. ”

In this episode Scarlet has a conversation with Churchill Fellow Peter Cursley about his work in creating the Newborn Intensive Care Foundation, which so far has raised over $4 million for the Neonatal Intensive Care Unit at Canberra Hospital.

Overcoming incredible loss, Peter has transformed his pain into purpose and has helped the lives of young families in the greater Canberra region. The Foundation assists Canberra’s NICU to provide nation-leading support for hundreds of newborn babies and their families in and around the ACT region each year.

Peter was recognised for his work in the 2016 Australian of the Year Awards, nominated at the the ACT State Local Hero.

Peter now has plans to extend the reach of his Foundation to the Gippsland region with a focus on providing much needed medical equipment to the Sale and Bairnsdale hospitals. If you would like to learn more about Peter and his work with the Newborn Intensive Care Foundation please follow the link: https://newborn.org.au/

Visit Peter Cursley’s Churchill Trust Project Page here.

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S01E02: TRANSCRIPT

Yellow Edge: Please note that this episode includes the description of the tragic loss of a newborn child. Listener discretion is advised.

Yellow Edge, in association with the Winston Churchill Trust, proudly presents the Wayfinder Podcast. In this series, we ask high-performing individuals how they plotted the path to success. Our guests are all Churchill fellows, having been provided the opportunity by the Churchill Trust to research their chosen field internationally.

The Wayfinder explores the often winding paths of how these fellows came to their professions and catalogs the trials and tribulations faced along the way.

And now your host, Scarlet Bennett.

Scarlet Bennett: Hello my name is Scarlet Bennett, and I'm talking today with Peter Cursley, who has raised more than $4 million for neonatal care through his Newborn Intensive Care Foundation, which funds equipment, training and research for newborn care in the Canberra region. Welcome Peter.

Peter Cursley: Thank you, Scarlet.

Scarlet Bennett: Delighted to be talking to you today. I wonder if you could start by telling us a little bit about your Foundation?

Peter Cursley: Well, the concept was created in 1993 and the foundation launched by the then Chief Minister of the ACT Kate Carnell in 1995. And according to Professor Graham Reynolds, who was the Associate Dean of Admission at the ANU in John Curtin School - and he was previous Clinical Director of pediatrics at Canberra Hospital - according to him, he says that the Foundation has enabled the Neonatal Intensive Care Unit or NICU at the Canberra Hospital to lead the nation in many areas of clinical support and family care. We've been able to do a lot in the 27 or 28 years that we've been going.

Scarlet Bennett: And are there any - you mentioned you've done a lot, are there key successes that you'd like to mention things that really spring to mind?

Peter Cursley: Yeah, there are. We have, our focus has been on the Canberra NICU primarily because it's a tertiary neonatal intensive care unit as opposed to a special care nursery.

So that means that sick babies from all over the regions come to Canberra hospital for care. So they'll come from Wagga Hospital or Bega Hospital or Moruya Hospital. And sometimes they're being fed from other smaller hospitals into those larger regional hospitals. And then they come on to Canberra. So I think probably our biggest general achievement has been able to provide equipment where babies coming from those regions arrive at Canberra NICU in a much healthier state than they otherwise would.

Scarlet Bennett: And what would you describe as the biggest challenges you've faced through this journey with the Foundation?

Peter Cursley: The challenge is raising money. That's, that's been the, the hardest thing. I mean, there's so many good charities that people can donate to. But my thinking is that if you can, if you can intervene as early as possible with some positive clinical care and the best possible resources, you can prevent blindness, and you can prevent brain damage and cerebral palsy and a host of other issues. Which means you've got a healthy child growing up instead of a child that has a lot of developmental issues. Which means that they can be quite a burden on their families and on the community, and on the government welfare right throughout their lives. And in my way of thinking I'd much prefer to give that clinical care early on and have a healthy young kid running around the school yard, to me it just makes a lot of sense. But at the end of the day, we are competing with a lot of other great causes and it's just the environment we have to work in.

And then of course, COVID, you know, that's been a disaster for us, really for the last couple of years, because one of the one of my main fundraisers is what we call Bake for Babies. And Bake for Babies is a concept where essentially I'll get other people to do the work for me. Being essentially a one-man-band, I don't do balls and I don't do functions and so forth. Cause there's too much human resource needed for all that sort of thing.

So Bake for Babies is a great solution. We just ask people to bake whatever they want, sell their baked produce to whoever they can and deposit the proceeds into the Foundation's bank account. Well, with COVID of course they weren't able to have their office get togethers or morning teas or afternoon teas or family get together.

So we've had two dismal years of fundraising because of that. That's been a huge challenge.

Scarlet Bennett: It sounds like, one of the big successes for you over the years has been this preventative aspect, that you're making a difference before some of these difficulties arise.

Peter Cursley: Absolutely. Absolutely. You know, I think one of the things we're raising money for here in the Gippsland area for Sale Hospital and Bairnsdale Hospital is what's called a Resuscitaire Warming Cot and they're about $45,000.  They’re are cot with resuscitation equipment attached to it. So it's perfect for having, in readiness in a birthing unit, just in case a baby is born not breathing. There's the resuscitation equipment all there. Well, there is a Resuscitaire in both Bairnsdale and Sale's emergency areas, but there isn't one up in the birthing unit and that's exactly where you need it.

Scarlet Bennett: Right, yes so fabulous that you'd be able to, you're able to expand this out into some of those regional communities. I understand that you have a very personal reason for spearheading this cause. And what can you tell us about the circumstances that inspired you to launch the Foundation?

Peter Cursley: It really starts with the birth of our first, Megan. She was she was overdue, quite a bit overdue and, and we had to go into the Canberra Hospital each day at lunchtime for them to take her heart rate. And we did this - and I don't know whether you're familiar with the term, galloping horses, but that's the sort of sound, the baby's heart rate makes - Anyway, my wife was hooked up measuring the baby's heart rate and normally they would leave us there for five or 10 minutes and then they’d come back and have a listen. Well, this time they left us a bit longer and yeah, we could hear the baby's heart rate ‘ch-ng ch-ng ch-ng’ which was wonderful.

But then all of a sudden that sort of sto—it went ch-ng...ch-ng…ch-ng-ch-ng…… ch-ng.

And we obviously went white in the face and raced out and got the nurse and she came. She went white in the face and she went out to get the senior nurse and senior nurse came in and said to my wife, you'll be having your baby today in here. And basically with that, we were whipped up into the birthing unit.

And I, I was following her and they said, “oh, can you just wait there?” And I thought, right, I'll just wait here. And then the next minute that came out with a baby and I thought I'd at least be able to go in and give them a wife, a kiss and ‘good luck darling’, and that sort of a thing. But no, it was just that's how much of a rush that was.

So what came from having our second baby? Back in those days, you weren't allowed to have a natural birth in the hospital with an untested Cesarean scar. So we opted for a home birth. And we justified it in that we had a couple of midwives, and we were only in Farrah and the hospital is just down the road, two or three minutes drive.

And everything seemed to be going well. Hannah was full term. And my wife was having a shower and she collapsed in the shower and the midwives came and tested Hannah's heart rate and it was either not there or very faint. I'm not quite sure now what, so we raced to the hospital and Hannah was basically born blue.

And the nurses there revived her. They didn't have any resuscitation equipment, but they revived her, and and I can just remember this nurse saying you've got a very, very sick baby, a very very sick baby. And then this fellow came in and he wandered over the cot went out again, and came back with one of those mini recorders and I'm sort of thinking, you know, why was he recording us? Does he think we're going to sue the hospital or whatever?

Meanwhile, you know, poor old Sue is still on the stainless steel slab. And anyway he recorded our conversation and then he left. And we were there till quite late at night while they were working on, on Hannah. And I went home to go to bed before that I listened to the type that he gave me. And it was interesting because the first thing you said is “I'm recording this because you're not going to hear anything I say.”

And he was dead right and it was so interesting to hear that recording. And he did, he was Dr. Guan Koh. He was a sensational person. He now heads up the Townsville Neonatal Intensive Care Unit. Anyway, we were very gently counseled by Guan, Dr. Guan Koh. And you know, we're sitting across the table from him and we're crying and he's handing us tissues and he's crying as well.

We were basically counseled that, that, that, they had done some tests on Hannah and there was very little brain movement. And so we were sort of counseled that we should possibly consider letting nature take its course and disconnect Hannah from the intensive care life support equipment. So we did that and the little girl passed away some hours later.

And we buried her-- funnily enough-- yesterday at 3:00 PM, 28 years ago.

Scarlet Bennett: And then those, those wounds, they stay so raw. Don't they? Those losses?

Peter Cursley: Absolutely. Absolutely. So after that although it was just a brief period, she was only two days old when she died, but the support that we were given in the hospital and the support that our youngest daughter - she was only three at the time you know, the nursing staff took her off and entertained her and so forth.

So we were keen to sort of say, thank you and give back somehow or other. So I went and saw Dr. Koh and said, ‘you must have a wishlist?’ And he said, ‘yes, I do.’ And he pulled it out of his top drawer and it was just too many zeros on the end of numbers that I, I couldn't afford to make a dent in really.

So I thought the best thing was possibly get the community involved and start a Foundation. And that's when in November ‘93, we developed this concept as a Foundation.

However, in two or three months later in the January my wife was diagnosed with a glioblastoma and only given months to live. So we, we fought that for 18 months until she passed.

And then I re-ignited the Foundation. And so we launched it in 1995. So that was my little personal journey to where we are now if you like.

Scarlet Bennett: and a heartbreaking one. It's obvious that the Foundation has made a huge difference to many people since you've been operating it Peter. But has it helped you in processing your own loss?

Peter Cursley: Look, it has, I guess, as you say, you don't, you never lose it. Things like, you know what we're talking about now. And you know, and the fact that yesterday was the funeral and when those things happen, the feelings come back pretty raw, but the rest of the time you put them in the back of your head and you sort of don't think about them too much.

But creating the Foundation. I guess keeps purpose for something. Turns a negative--a shocking negative into an amazing positive. I got a great email from a lady who funnily enough, I used to work with and she emailed me. She found my email online and she sent me a letter to say, thank you because her baby was born premature in the Canberra Hospital.

And was really not given much chance of survival. But the email went on to say that her daughter had not only survived, but became a great gymnast competing on a national stage. She became a great dancer. She got the New South Wales, Premier Young Sports Persons Award, you know, and that's what we're trying to do.

It's not about saving lives. It's about the quality of life. I guess we could have saved Hannah's life, but there would have been no quality. So. I think taking, letting nature take its course, there was the right thing, but where we can prevent something—whether blindness or brain damage, with the equipment out there and the clinical knowledge, then we need to get that equipment. And we need to share that knowledge throughout as many hospitals as we possibly can.

Scarlet Bennett: That's really fantastic. And I understand that in 2016, you won an ACT Australian of the Year Award. How did you feel about that?

Peter Cursley: Look, I never ever sought recognition for whatever I've done.

I've always preferred to do things in the background, but it was a really nice feeling, not so much for me, but for my kids. So my kids could see the achievement and I thought, you know, having, having your kids proud of what you've done, I think that that was the most important feeling to me that came out of that whole experience or getting that award for the Foundation.

It definitely raised the Foundation's awareness. And I did hear from someone in the legal fraternity that there was a bit of spike getting people, including the Foundation in their will and so forth. So I haven't seen any evidence of that at this stage, but you know, you never know down the track.

Scarlet Bennett: No, that's right. And also, in 2017, you were a recipient of the Churchill Fellowship. Tell us about that.

Peter Cursley: Oh, look, that was an amazing experience. Really. I had this concept because when we created the Foundation, it was created so that there was not any administration fees that came out of general donations.

And to this day, there's no administration fees that come out of general donations and it was a 100% of donations actually go to a fund or the medical equipment or nurse education or research, primarily medical equipment. And the money raised in the region would stay in the region. So they were the sort of concepts we found that was quite a unique model.

And the reason I wanted to do the Churchill, I wanted to research Foundations in other countries started in a similar way to the Newborn Intensive Care Foundation yet they expanded. And I was able to find some charities in New Zealand and in Holland, Scotland and the UK and the New Zealand was a good one because it was close.

Holland was good because the charity dollar primarily goes to health and children, so I thought that that was a good place to start as well. As opposed to if you like to America where the charity dollar goes to education and religion. And I learned a lot just going around, because I didn't know what I didn't know to start and really want to soak up as much experience as I can get from these places and the concept I had for expanding the Foundation was to do it under one umbrella so we just have the newborn intensive care foundation and we'd have chapters. So that there'd be the Riverina chapter or the East Coast chapter or the Gippsland chapter you know what I mean? And very first meeting I had was with the New Zealand Neonatal Intensive Care Foundation, and they had expanded in Auckland you know, through Dunedin and Wellington.

And they created a different Trust each time they expanded, and they were in the process of unwinding all of that to put it all under one umbrella. So I was just amazed that that first meeting, it just confirmed my concept. You know, there was those sorts of things all the way around. And I think we had a tremendous sharing - you know, people said that they got a lot more out of meeting and talking to me than they thought I got out of the meeting and talking with them. But I think there was this fair exchange of ideas and concepts and so forth. So I think it was very, very beneficial to a whole raft of people.

Scarlet Bennett: And is there anything in particular, other than the structure that the Fellowship may have kind of shaped your next steps, shaped your thinking?

You know, you talk about that reciprocal thing. Was there anything that you learned on your travels that changed the way you were thinking of doing things?

Peter Cursley: Look I jumped from one idea to another and back again and so forth a few times. Volunteers, for instance you know, I've always being a one man band and, and also wanting 100% of donated money to go to buying medical equipment, et cetera.

When you've got a volunteer force. You've got to have insurances and you've got to have procedures, and all this work health and safety things. And it just seemed to me, to me to be hard work. And the other thing is that because we, we generally provide a product, a medical product and not a service where a lot of the charities I visited that expanded into providing a service. And what I mean by a service is that they would have volunteers who would go into the hospital and support young moms, talk to them and, you know, get them a cup of tea and a cup of coffee and a cake or whatever it might be - in going around.

I thought, gee, you know, there really is a need for that. And I thought we should do that. And then I thought, no, when they told me all the things about having volunteers they're a pain the in neck, blah, blah, blah, blah, blah. I think I'll cross that off the list. And fortunately we were lucky in that. We've got Miracle Baby. That offer that sort of support, and you've got Ronald McDonald House and, you know, those sorts of things, you know, I guess it, it confirmed to me that we needed to stay in that space where we just fund medical equipment research and nurse education.

Scarlet Bennett: So I gave you real clarity on your niche, if you like and where you would contribute.

Peter Cursley: Absolutely now, obviously I need volunteers and I do have some. I don't refer to them as volunteers. I refer to them as projecteers, and that means basically if someone wants to help. I put them on to do a project, whatever their skills might be, I can, you know, I can create whatever you know, space for someone who's got particular skills and whether website design or, or sales or whatever. And we set them up with a project and basically it's theirs, they own it. And when that project comes to an end, well, the arrangement finishes or they might choose to pick another project and get on. So, you know, that's the sort of concept that I have the projecteer as opposed to a volunteer.

Scarlet Bennett: Yeah. That's interesting, an interesting difference. Isn't it? What about in terms of where you're at now? You know, that's where you've come from and how it's developed over the years.

Where are things sitting for you with the Foundation now? You mentioned it's been a hard few years with COVID.

Peter Cursley: I certainly has, you know, we're sitting in a pretty good state financially. Which means that unlike if the, I mean, we take our lead from clinical staff. If they want a piece of equipment, they'll ask us.

And I have a Board made up of previous pediatricians or neonatologists, bankers, and solicitors I simply email the request out to the board and within about 72 hours, they'll come back to me with a yes, we will. They've never said no, quite frankly. They've always said yes. So yes, we'll fund it.

And then I can get straight back to the hospital within three or four days and say, ‘yes, we'll fund it.’ As opposed to, if they do it through the Department of Health, it can take months. And a matter of fact, there was a piece of equipment that we said we would fund and it needed some consumables that would go with it. So it had to be approved through the Government Department of Health and so forth. We're in the process of that months of approval system, the product went up $70,000, because that was the time where they American dollar just was lower than the Australian dollar. And then all of a sudden it flipped around. So I did go on and see the director of ACT Health and she said at the time, if you ever got a big piece of equipment like that, come and see me and I can get rid of nine layers of bureaucracy for you.

Scarlet Bennett: Fantastic. That's really great. And what's next for you, Peter, in terms of you personally and also the Foundation?

Peter Cursley: Well, the Gippsland is the focus at the moment. We're well-established I mean, Canberra. This year alone, we've donated a giraffe humidity crib, a phototherapy blanket - a phototherapy blanket is like for babies with jaundice, you know, they have the phototherapy lights. Well, this is a blanket that that can be wrapped in. And so they can undergo the therapy for jaundice. While they've been nursed by their mum, for instance. A cooling blanket, which babies who are born, having trouble breathing, if you can lower the temperature a bit, it prevents brain damage.

At Calvary Hospital, a couple of months ago, we bought them a blood analyzer. You know, we're still buying plenty of equipment and you know, Bake for Babies we sort of did virtually, which worked well. We've just started doing raffles online where people can scan a barcode or buy their raffle tickets online.

So basically Canberra they're sort of looking after itself. And my focus now is on Gippsland and if I can bring up to stand the Bairnsdale Special Care Nursery and the Sale Special Care Nursery and the La Trobe Neonatal Intensive Care Unit, that might take a few years. But then I would like to then develop the Foundation, into Hobart-- Royal Hobart Hospital because it's got the NICU there. It feeds from the special care nurseries in Launceston and Devonport and smaller hospitals around.

Scarlet Bennett: Makes sense. And do you have a sense of where you're hoping to be say in five years?

Peter Cursley: Five years goes in a heartbeat.

Scarlet Bennett: Yes it does, doesn’t it?

Peter Cursley: Yeah. Look I tend, I've got a rough idea where I want to go.

Short term goals are easy because, you know, I just asked the clinical staff, what do you need? What would you like? And so that becomes my single focus goal for that particular hospital. The longer term goal though. I don't set any timelines, I think. Yeah. I've got to be careful I don't try, I don’t burnout-- and I do a fairly ordinary job for a whole bunch of hospitals, and not a good job for a few. So I'd rather do a good job for few. So yeah, five years looking to be great to be a Sale and Bairnsdale and Gippsland regions established and then move on to Hobart.

Scarlet Bennett:  Yeah, sounds fantastic. And if people who are listening to this are really inspired and feeling like they want to help and get involved, what can they do?

Peter Cursley: Well, they could Bake for Babies, look they can do all sorts. Just a general donation, knowing that 100% of that donation will go to medical equipment or whatever. They can have a garage sale, they can get their rotary club, whatever involved to donate to the local that can go out and knock on the door of their local hospital and say, what do you need? And then they can get in touch with me and say, my local hospital needs such and such. We can create an account. Money from that local hospital region, that's donated, we're going into that account and that'll get it to fund whatever they want. And so they basically use our tax deductible status to fund the equipment that's needed at their particular hospital

Scarlet Bennett: So essentially they can create their own chapter to use your language from earlier.

Peter Cursley: Exactly.

Scarlet Bennett: Well, that's a really, really exciting possibility for people.

Peter Cursley: And we will you know, if there’s some nice to have things in in local hospitals, I prefer them to do their own fundraising - that community to do their own fundraising. Some things where - We bought in the past, for instance, ERICC which was an acronym for emergency retrieval intensive care cot, it's the size of a large desk. And it's full of all the intensive care equipment that you need and designed to go in the back of an ambulance or a helicopter to go out to the suburbs, Kambah or whatever. It can also go to Wagga and pick up sick babies. So as soon as they go in that, they’re in intensive care, where previously they had to get to Canberra Hospital.

So the Foundation will fund equipment like that. That means babies from the regions will get to the Canberra Hospital in a better condition than they will do without that piece of equipment. But if there’s some nice to have things, it would be good for the other hospitals to - or people in the community to get together and raise - help raise money for that particular hospital.

Scarlet Bennett: Work out what they need and then start to raise the funds themselves, yea. So any closing thoughts from you, Peter? Anything else that you'd like to share about the Foundation? Any anecdotes, anything that's of interest?

Peter Cursley: Yeah. I'll give you an example-- babies in ventilators on particular gases, on oxygen for instance, they run the risk of having the vessels in their eyes expand and they can pop.

And if they pop that leads to blindness, it's called retinopathy. Now previous to us buying an eye laser babies had to be transported to Sydney to have the laser treatment to prevent this retinopathy happening. Now that meant basically, we had to transport to Sydney and an intensive care cot, theater time, an ophthalmologist and you're separating the families at that stage.

Now the eye laser costs $70,000, which is next to nothing. And when you compare it to… I think it costs something like $35K or $40,000 to train a puppy to become a guide dog, it costs something like $5,000 in support for a young child to start school. And it's like $12,000 for the equipment for that young child to start school.

And the costs just keep going yet for $70,000, we've got an eye laser and visiting ophthalmologists comes in when necessary, and that saved the eye sight of 22 babies. 22 kids running around…  and people say the government should fund this. Well, maybe, but if the government funds it, now taxes have to go up. The money's going to come from somewhere and I don't know about you, but I don't necessarily trust the government will send my taxes where I want them to go.

So that's where donating gives you control. You can donate your money where you want it to be and know that that's what it's going to be spent on. So that's, that's certainly the model I prefer is donating.

Scarlet Bennett: That's a really inspiring story, Peter Cursley thank you very much indeed for your time today and for sharing such a wonderful inspiring story. And it's so lovely to hear what you've done and, and how you've transformed such a challenging personally experience into something that has helped so many people over the years. Thank you.

Peter Cursley: Thank you Scarlet

Yellow Edge: Thank you for listening to the Wayfinder Podcast. For more information on Yellow Edge and our services, including professional development, coaching, strategic support, mediation, and venue hire, visit yellowedge.com.au. For more information on the Winston Churchill Trust visit ChurchillTrust.com.au.