It is every parents dream, the hope of a healthy baby. And in 2006 Sophie Smith thought she had her whole families future ahead of her. A loving husband, and triplets on the way. But then, at 21 weeks her waters broke and shortly after, her new born baby son Henry passed away in her arms. Three weeks later her other two babies, Jasper and Evan were born at 24 weeks, and the journey over the next few months watching her boys fight for their life was something Sophie never thought she would be enduring. Tragically at 10 days old Evan passed away, and a few months later Jasper followed. This is a remarkable story of a mothers love, and that through such unbearable grief a way was paved so that others could find hope. We talk to Sophie about her journey from the heartbreak of losing her three babies, and shortly after her husband Ash, to founding Running for Premature Babies, a charity that aims to bring hope and healing to families of premature and critically ill babies.
Tell us a little bit about yourself. Where are you from and when did you start running?
I was born in Japan to British parents and spent the first 29 years of my life living in 9 different countries around the world. At the end of 1999 I came to Australia from Thailand as a teacher with only a backpack and a mountain bike.
Have you always been active and involved in sport?
No! I was terrible at sport when I was at school and was always that kid who was last to be picked for a team in school sports lessons. I first started running in my late 20s when living in Thailand. I volunteered on an aid station at the Phuket triathlon and was so inspired by the athletes that I decided to start running, and then signed up for the race the following year. From then on I used to run for fun, and when I came to Sydney I soon discovered Centennial Park and the coastal track from Bondi to Coogee and enjoyed running there with friends. I hardly ever ran more than about 5 – 10km though.
When did you start Running For Premature Babies and why? Tell us the story of how it started.
In 2006, I thought I was the luckiest person in the world. I was newly married to Ash, and was absolutely beyond excited to be pregnant – with triplets!
We spent the first 6 months of my pregnancy preparing for our instant family. We bought a triplet buggy that we assembled and which sat in our hallway, three little seats in a line, awaiting its precious cargo. I was warned that my babies would probably be born early, but I thought that just meant staying in hospital until they fattened up and came home.
But then only 21 weeks into my pregnancy I found myself in hospital being told my waters had broken, that all 3 of my babies would be born within 24 hours and at this early gestation nothing could be done to save them.
That was the start of a roller coaster through the next 84 days during which time we went from hope to despair and back to hope again several times over. Our first baby Henry was born five days after my waters broke, too early for medical intervention to help him, and he lived for one precious hour in my arms. To everyone’s surprise Jasper and Evan didn’t follow until 3 weeks later when they had reached the ‘magic’ 24 week mark, meaning their lives could be saved. We were told Jasper and Evan had a 50% chance of survival.
Our boys were born with their eyes still sealed shut and their skin translucent, and so small that Ash’s wedding ring fit around their arms like a bracelet. Their lungs were so underdeveloped that they needed life-support in the neonatal intensive care unit at the RHW to be kept alive. Despite all this, to me they were the most beautiful babies I had ever seen, and I believed they would pull through.
Both our boys had a good first week, and many hours were spent gazing at them through their humidicrib windows while the incredible neonatal team worked around the clock to try to save their lives.
When they were ten days old Evan suffered a massive brain haemorrhage. The first time I held Evan was when his doctors removed his life support and he died in my arms.
Our little Jasper overcame many hurdles, and we shared many happy memories. Our little boy doubled his birthweight, and we celebrated small milestones, but he suffered from chronic lung disease, so common with premature babies. We were shattered when, at 58 days old, his lungs collapsed and no more could be done to save him.
After our three boys died Ash and I were left heartbroken but determined that something good could come from our boys’ lives. We learned that ours was a tragedy that affects many – one in 12 babies are born prematurely in Australia, equating to 26000 each year – and that state of the art life saving equipment is needed to give them a better chance of survival – equipment that is often not funded by the government. We realised that much of the equipment keeping our boys alive had been donated and that new technology meant better equipment was available.
So as a way to help me through the days after our babies’ deaths Ash suggested we run a half marathon and try to raise some money for the hospital.
I thought this was a brilliant idea and decided I wanted to raise $20,000 for a new humidicrib. I threw myself into trying to find people to run with us. I created a flyer which I put around my local Randwick neighbourhood telling people about my triplets and their brave fight for life and my quest to provide a humidicrib in their memory, and was amazed with the response! I loved the challenge of recruiting new team members, and would ask absolutely anyone who crossed my path if they’d like join my team and run a half marathon. I once signed up a woman standing next to me in the queue for the bus and another in a shoe shop. I certainly didn’t have a hundred percent hit rate but my team grew and I was busy organising group training sessions, and getting team uniforms donated. Channeling my grief like this gave me a renewed sense of purpose and helped me through the most difficult of months.
Nine months after our babies were born, and seven months after our third baby Jasper died I toed the start line of the SMH Half Marathon with a team of 98 runners. We well and truly smashed our $20,000 fundraising target, raising $80,000 and four new humidicribs were purchased!
As soon as that first race was over I knew I wanted to do it all over again the next year and Running for Premature Babies was born.
What impact does Running for Premature babies have today on the community and how have you seen it grow from when you first started?
Today we are a registered Australian charitable foundation, inspiring people to take on running challenges to raise funds for our cause. Our vision is for a better chance of survival and quality of life for premature babies and our mission is to provide lifesaving neonatal equipment, to inspire people to run and to celebrate all prematurely born children, living and lost. So far over 4000 people have run with us and we’ve raised $3.5 million for the Royal Hospital for Women’s neonatal unit which has directly benefitted approximately 6000 babies so far and made a tangible difference to survival outcomes. Today this unit is the biggest and best in the State, and a baby born there today at 24 weeks now has a 70%, not a 50%, chance of survival.
Our group has become so much more than just a fundraiser. We have become a community who support each other – to achieve running goals some people never believed possible, and also to support each other through shared experiences.
Many people join us because they have a personal connection to prematurity or baby loss. Many are parents of children who have survived their prematurity, and they are able to support each other with the challenges they face as their children grow.
As well as families with children who have survived prematurity, we also attract runners to the team who had suffered the loss of their own babies to miscarriage, prematurity, SIDS, stillbirth or sickness. Our team has become a space that allows parents to honour babies who have died, at every gestation, and helps families and friends around them express their support. People have told me how this team has given them the chance to share their grief with others and how running in their baby’s name to give other babies a better chance has helped them heal.
We provide free training several times a week in the lead up to the SMH Half Marathon each year, and also organise social events. Firm friendships have been forged between runners, and we’ve even had a wedding!
We’ve also grown over the years to enter teams into other events beyond the SMH Half Marathon. While this event is still by far our biggest (we had 470 runners last year and I’m hoping for 500 this year!) we also now enter teams into the City2Surf, the Brisbane Marathon Festival and the GoldCoast marathon festival. I’ve taken teams to run full marathons in New York, Chicago and the Annapurna marathon in Nepal! And this year for the first time we’re entering a team into the Australian Outback Marathon in Uluru on 25 July.
Our funds now support not only the Royal Hospital for Women in Sydney, but also the Royal Brisbane and Women’s Hospital, NeoRESQ and Alice Springs Hospital.
Who can be involved in RFPB and what does it involve?
Absolutely anyone can be involved! You don’t have to have a personal connection to prematurity or baby loss. It doesn’t matter how old you are (last year our youngest was 2 and our oldest was 92!) or how fast you are. We have runners from the very front to the very back of the pack! You can join one of our team events (mentioned above) or you can run absolutely any event of your choice around the country (or the world!). We ask that each runner tries to raise $200 for our cause, and we’ll give you a free running singlet and cap. You can join our free training sessions if you’re in Sydney, and we have group runs in Brisbane too.
If you’re in Sydney our main event which is coming up is the SMH Half Marathon which also has a relay option if you pair up with a friend (9.5km/11.5km) and for this we offer 16 weeks of free training. We’re very welcoming and inclusive and we have lots of fun along the way! For the past three years we’ve had 500 in this event each year and it is so much fun as we meet at 6am on the morning of the race for a team photo, and the atmosphere is amazing with everyone in their team uniforms! The camaraderie on the course between our runners is amazing, with runners helping each other along, high fiving and waving along the way and cheering you from the side lines. People always comment on the amazing spirit of our team! People can create teams within our teams – so you can still be part of your own team but be under our Running for Premature Babies ‘umbrella’!
Our team training is fun too, and I organise some social events along the way such as a team bbq and a team dinner.
We also have a large contingent in the City2Surf. Last year our oldest participant in this was Heather Lee, a 92 year old world champion speed walker! She’s absolutely amazing and this year will be running the relay of the SMH Half Marathon for our charity with Ben Quigley, a Bondi Lifeguard!!
We also organise a kids fun run in Sydney and Brisbane each year for kids ages 2 – 12 years, which is loads of fun and celebrates all prematurely born children, living and lost.
Please see our website www.runningforprematurebabies.com and Facebook @runningforprematurebabies and Instagram @runningforprems
What do you think makes running have such a profound impact on people, and how does this helps you as you use it as a vehicle for change with your organisation ?
Before I started Running for Premature Babies I had no idea how much running would help me personally to get through the most difficult times of my life. (It helped me not only after the deaths of my triplets but also after the death of my husband to brain cancer nine years later) But looking back I don’t know where I’d be without it. If I’m running alone it’s my meditation, and if I’m running with others I love the connection. On days that I’m feeling down the hardest part of the run is putting my shoes on and getting out the door. Once I start running my spirits are always lifted.
After Ash died I started training for my first full marathon, and having training to focus on really helped me through some very difficult weeks. I was so thrilled to cross the finish line of the New York Marathon 9 months after he died in 4 hours 4 minutes. That was going to be my one and only marathon but I signed up to run Chicago marathon the following year as I wanted to run under 4 hours. I was delighted to cross that finish line in 3:59:25!!!
Over the years so many people have told me how running and our team camaraderie has helped them too. Just today I bumped into someone at the shops who ran with us 9 years ago. She told me how much this team helped her through her depression that year when she joined our team after she suffered a miscarriage.
I love that we use running as our vehicle to help give premature babies a better chance. We end up not only helping the babies but our runners too.
What do you like to do in your spare time when you are not running?
I love to go to the beach with my two living sons Owen (11) and Harvey (9). We love the water and can be found at the beach 12 months of the year!
What are the goals for the future with RFPB and how can we help?
Our goals for the future are to make a difference to the lives of premature babies right around our country. I want to create more running communities, raise more funds, provide more lifesaving equipment and ensure more families get to take their babies home.
RMA’s can help by joining one of our teams (SMH, City2Surf, Brisbane marathon festival, Goldcoast marathon festival, Sunshine Coast marathon festival and Australian Outback Marathon) or running your own race for us, by spreading the word about Running for Premature Babies in your communities, and by following us on social media and sharing our posts.
Are there organised sessions etc or do you network online and at events?
For the SMH Half Marathon we currently have team training every Sunday morning in Centennial Park, and we also have Interval training sessions in the City on Tuesday lunch times, and in Queens Park and Frenchs Forest on Wednesday evenings. Our friends at Rejoov Runners also offer free training for any RFPB runners at their sessions in Centennial Park on Tuesday or Thursday mornings.
Our volunteer Brisbane coordinator Charlene Cassie will be organising group runs in the lead up to the Brisbane half marathon with RFPB.
We also network online and have a very active social media community. I send out weekly newsletters to runners on the team, sharing inspirational stories from runners on our team, training tips from our trainers, fundraising tips and stories and more.
How do you fit your training in around working and other commitments? Is RFPB your full time job?
RFPB has been my day job for the past 3 years, since we registered as a Charitable Foundation. I train early in the morning 3 times a week before my kids wake up, and also attend the team training sessions in the 16 week lead up to the SMH Half Marathon. My boys come with me to these and they also participate in races with me now too.
What is your most memorable moment with your running and RFPB? How has that impacted you and your work?
For me the best part of the RFPB journey is when I get to meet the families who have directly benefitted from our fundraising, and there have been many. Last year Emily joined our team in the Sydney Half Marathon to celebrate the survival of her daughter Charlotte. Charlotte was born at 26 weeks severely growth restricted and weighing only 498g. She spent her first four months in a new giraffe humidicrib, attached to the new advanced monitoring system and using the very latest Nava ventilator to support her underdeveloped lungs. All equipment provided by RFPB and equipment which, had it been available in 2006, may have saved the life of my baby Jasper.
Actually meeting and holding this tiny little girl, while listening to her parents talking with great excitement about their plans for her upcoming first birthday party, and knowing that my little boys had played a part in helping this precious little baby girl to reach this happy milestone, was really amazing.
You since went on to have more children after your triplets had passed away, and your husband was such a huge support to you. Tell us about him.
Ash and I went on to have two more sons, Owen, now 11, and Harvey, now 9. Tragically 2 years after our triplets died, when Owen was only 6 months old, Ash was diagnosed with brain cancer and he passed away seven years later in February 2016. Ash faced his illness with such courage, even continuing to run on our teams between surgery and chemo. We ran our last race together, the SMH Half Marathon, in May 2015. It took us 3 hours to complete the 21km course and although it took a superhuman effort to do it, he never gave up. Ash was by my side every step of the Running for Premature Babies journey and he taught me it’s never okay to give up. I know he’d be very proud of how far the charity has come since he passed away.