Rach and Dan have had their fair share of ups and downs. Over just a few short years they have faced unbearable loss, a terrifying accident and a cystic fibrosis diagnosis with a resilience and optimism that is truly remarkable. And along the way they have been blessed with a miracle baby, appropriately named Hope, and a gorgeous little boy, Leo. This beautiful family can teach us all about how a little bit of hope can go a long way.
Who lives here?
Rach – Well me [laughing] Rachael, Daniel, Hope and Leo.
What does a typical day in the life of your family look like?
Rach – It’s all a bit strange since COVID. We've got into a new system where we alternate mornings. One of us will get up each morning and do breakfast with the kids, get them organised and the other one has a little bit of a sleep-in. The kids aren’t sleeping too well at the moment, so we tag team so at least we know that every second morning we are getting a little bit of a chop out in the morning.
And then Dan goes down to the front room, his home office, and sits on Zoom calls for about nine hours. For myself and the kids, every day is different. I work part time but we don't have any solid childcare because of the pandemic, so we just make it up as we go. And then, yeah, come 5.30 it's basically a shitshow. [Laughing]
Dan – All hands on deck. We just do what we need to do to get the kids down. Then collapse into bed at about eight o'clock. Sometimes we watch a bit of true crime... It’s very strange but that is Rach’s wind-down [laughing]… very relaxing.
Can you tell us a bit about the journey that you have travelled over the last couple of years?
Rach – So back in 2017, we were pregnant with our first child. We didn't know what we were having and at about 33 weeks we went in for a regular checkup and found out that our baby had in fact passed away. We had a late term stillbirth.
That was obviously a massive shock to the system. Not something that we were expecting, would have a plan for, or even really had thought about. So you know, obviously, a lot of grief, a lot of emotions to deal with.
Dan – It was awful. Watching Rachel go through the experience of giving birth to a baby that had already left us was very traumatic, to say the least.
Rach – Very sadly, we happen to know a few people, a few friends of mine, that have been through similar things. So being able to talk to people, post our own experience, that understood exactly what we were going through, really helped us move through the stages of grief and never forget our little angel Autumn.
Dan – We were pretty resolved to start a family and while Autumn couldn't be with us, we found out pretty soon after that, that Rachel was pregnant again with Hope, who is now three.
Rach – We did find out the sex [for our second pregnancy], because we wanted the process to feel a bit different, I wanted to feel more in control. We found out we were having another little girl. We went to a high risk specialist obstetrician as part of that process. We did a lot of routine testing, one of which was a genetic carrier screening testing, and lo and behold, after about four weeks of back and forth testing and retesting we found out that we were both carriers of cystic fibrosis, a recessive genetic disorder.
Dan – So then, once you're both carriers, you test the baby baby because the baby can be just a carrier as well and not be affected. So we were down to a one in four chance of Hope having cystic fibrosis.
The numbers had worked so badly against us up until then, we thought she's definitely going to have CF. They can do some testing in the womb and find out whether the baby is a carrier or has the disorder and sure enough she did have cystic fibrosis.
Rach – We knew what we were facing from about 22 weeks into the pregnancy. We were recommended to get some genetic counseling. So pretty quickly after we found out, we went and did that, and they put us in touch with the Royal Children's Hospital which has one of the biggest cystic fibrosis children's clinics in the country.
We went and saw the head of respiratory medicine and he was really fantastic. He talked us through everything; a lot of medical statistics and facts but also [dealt with us] with a lot of compassion. His personal experiences made us feel, you know, really comfortable with the decision [to continue with the pregnancy], which we probably would have made anyway.
[We felt prepared to help our] little girl face the challenges that would be coming. Knowing that things were changing in the CF space helped a bit as well.
We found out we were pregnant with Hope on the first day of Autumn. So there were all these little signs along the way that she was going to be a special child. So really, there wasn't a decision to be made and we just went ahead and started immersing ourselves and learning everything we could about CF and becoming part of the CF community.
Then on the 25th of October, 2017 little Hope came along. A little miracle baby with a name that represents the optimism we have for her future.
Dan – And she shares her angel sister's name. Autumn is her middle name.
Rach – So then obviously, [we had] all the normal fears that you [have] as a parent, lots of sleepless nights etc, along with all the other additions that CF brings.
Daily physio, a daily nebuliser session, multiple antibiotics, Orkambi (the new wonder drug) morning and night and creon granules with every meal so she can digest her food. [Hope attends] monthly CF clinics which include blood tests, liver function tests, vitamin levels, weight management and an annual lung lavage operation under general anaesthetic requiring a hospital stay, etc. So it certainly kept us busy. I mean you just don't know any different with your first child. Then Leo came along and he seemed a lot easier in comparison. [Laughing]
Dan – Exactly, it's all relative.
Rach – But then we had a 16 month age gap to deal with. Six months after Hope arrived, on the night of the cystic fibrosis ball, we found out that we were pregnant again. We found out that he was a carrier of the CF gene but not affected. So two babies.
Dan – Well three, right? You started your business too.
Rach – Oh yes, when Hope was just a few months old, it became very clear to me that I wasn't going to be able to go back to what I was doing previously, workwise. I was already starting to think about what my next move should be because I needed to do something, we needed two incomes.
After many years of media networking and quite a few people asking me media related questions, I thought there's just such a good opportunity [to start a business]. I started out with three other people and starting as a team, initially, got me going in terms of setting up the business. Then for various different reasons we ended up parting ways, it was all really amicable, but yeah flying solo with a new baby, and heavily pregnant with the second one on the way... I couldn’t take any time off when Leo was born.
It was one of those tricky ones because we didn't have a lot of child care options because of Hope’s cystic fibrosis. We made the decision that we wouldn't send her to childcare (it’s a personal decision). We had the capacity to not send her to childcare so you know we wanted to protect her health, particularly [in those] younger years when you know they're going through so much growth. It's very important to protect their lung health. It just ended up being a fog for a couple of years but we could see the light at the end of the tunnel.
Dan – Now with COVID, it's changing how everyone is working and everyone is home all the time. And here we are.
When you need help, who is your village?
Rach – Family and our friends. We realised pretty early on after losing Autumn, how lucky we were to have such an amazingly supportive and wide network of family and friends that were always there for us and had our backs. They've just been amazing.
And to talk to other people that have been through a similar journey [has been so helpful]. We feel really inspired to share our story [now] to help others, as they go through similar journeys. And for them to know they can get through it and that there are people out there to support you.
Can you tell us about a time when your village was your lifeline?
Dan – Well here’s another story for you. When COVID first came to Melbourne and we were in lockdown, I went for a run. It was Good Friday. [Melbourne was] in lockdown and it was very quiet. There were no cars anywhere. I ran down the laneway and came out towards the main road. I checked both ways and went across the road. I was then completely taken out by a car going about 60 kms/hour. I rolled onto the bonnet, head through the windscreen, flipped off and landed on the bituamin. I lost consciousness and woke up with an ambulance and voices there. I was rushed to the Alfred hospital. But I was very lucky. Turns out I broke my leg and had a severe concussion.
I do remember everything just slowing down right at that point of being hit by the car, and just thinking this is a really crap way to go. And also thinking “Where the hell has this car come from?” Because I just looked twice and saw no car. And, I remember saying goodbye to the family [before leaving house]. It was really weird because before the run Hope was making a big deal about me going out. So it was a big deal goodbye. I was thinking at that moment before the car hit: “at least I said goodbye to my family”. Rach, don’t cry!
Rach – I did know that. He told me that at the time, but it’s just making me emotional today.
Dan – It was all pretty traumatic but I was extremely lucky. Just to escape with a broken leg and concussion. But I remember feeling pretty helpless after that. Being on crutches and, you know, during COVID, we couldn’t see our families for support. We still had two kids, the business and my job. I think that's when our village was able to help us out. Our village arranged for a cleaner and there was some food and [some other] things that made life easier. It really helped [us] get through those times, because I was feeling pretty useless at that point.
There's no right way for your family and friends to respond through difficult times, but can you tell us one time when someone did exactly what you needed?
Rach – The best example being after we lost Autumn. Everyone came together. Whether it was dropping off food, you know, and all kinds of essential things. There was definitely a dark period there. We just didn't want to get out of bed. We just didn't want to put one foot in front of the other. We felt really defeated and, you know, disconnected and just simple daily chores became really difficult. Having people looking out for you and dropping off gifts just made life so much easier.
And then everyone rallied together and put in for a trip to Port Douglas to get away from it all. So amazing! We ended up pregnant with Hope not too long after. It was just such a special and important time for us to relax and reflect and get away from the madness. That's a holiday that we will always remember as a special one to honour the memory of Autumn. It certainly felt very special. We felt extremely lucky and supported.
When things weren't easy. Was there a moment that made you laugh or see the brighter side?
Rach – I think after the car accident the running joke was, in a time when there were no cars, Dan still managed to find the only one on the road. [Laughing]
Dan – And also, with losing Autumn. It's very sad but also we wouldn't have had Hope if that hadn't happened. We wouldn't have had the chance to meet the kids that we have now.
Rach – It’s obviously heartbreaking. But to have gone through that journey, it really gives you a different perspective. I do appreciate the small things and know that getting back to basics is what's important.
Does your family have a Sunday ritual?
Rach – Well, one of us is on the sleeping rotation so whoever got that is lucky. And then, we get Home to Roost [takeaway roast chicken] or something… but since COVID, we've decided that Sunday is definitely [our] family day. Definitely the day I like to spend time together as a family.
Dan – Well, there’s time with your family and then there's quality family time. And that's our plan for Sundays moving forward.