Sophie Smith – Running for Babies

By Dan Hutton & Madeleine Gray on May 1, 2017 in People

(Thanks to the Coogee Pavilion for providing the venue – and bubbly – for our cover shoot)

Eastern Suburbs local Sophie Smith lost her triplets, Henry, Jasper, and Evan, to complications stemming from their premature births in 2006. Within a year, she had founded Running for Premature Babies (RFPB), a running group raising money for the Royal Hospital for Women’s Neonatal Intensive Care Unit. RFPB now has the largest running contingent in the SMH Half Marathon, and has raised over two million dollars. Sophie’s husband and partner in crime, Ash, passed away last year after a prolonged battle with brain cancer. This month, on the eve of the 2017 SMH Half-Marathon, we talk to Sophie about her incredible resilience, strength, and the insuppressible love of life that guides her…

Where are you originally from?
That’s actually a bit of a difficult question for me to answer, because I am British, but I was born in Japan, I grew up all over Asia, and I’ve lived in 10 different countries, so I’m from everywhere. I came to Australia at the end of 1999 and I have lived in the Eastern Suburbs for 17 years now.

What do you love about the Eastern Suburbs?
I love the beaches. I love the ocean pools. I love the coastal walk. I love the community. The Coogee community has been amazing throughout the whole RFPB journey, but more recently through Ash’s illness and then after he died. Coogee Surf Club, the Coogee Cougars, everybody’s come together to help me even though I’m not originally from Coogee. I feel so welcomed.

What gets your goat about the Eastern Suburbs?
What gets my goat is the number of people who would never dream of dropping litter, and yet don’t think twice about using the beach as an ashtray, or just flick their fag butts on the street or in the park.

Do you have any favourite local haunts?
Yes. Lots. The best fish and chips are at The Dolphin Fish Shop on Dolphin Street. We love Friday night fish and chips at the beach. Annie’s Restaurant is my most visited, and my kids and I have been known to pop down to Annie’s after dinner for dessert because they do the best Nutella pizza.

What was your profession before you started RFPB?
I was a primary school teacher for many years, and I absolutely loved it. Now I just have so much else going on in my life, and since having kids I just don’t have the patience for other people’s kids anymore. I don’t know if I’d be as good a teacher as I used to be.

You’re the founder of Running for Premature Babies, (RFPB), a running group you set up in 2007 after you lost your triplets, Henry, Jasper, And Evan; can you tell us about that experience?
The experience of becoming first time parents three times over was absolutely incredible. When I was pregnant with my triplets, we thought we were luckiest people on Earth, and then our joy turned to tragedy when Henry was born at 21 weeks and lived for just an hour. Evan and Jasper held on for another three weeks, and then began the rollercoaster that is the Newborn Intensive Care Unit (NICU) journey. Evan lived for 10 days and died of a brain haemorrhage, and Jasper fought on, but his lungs collapsed when he was 58 days old and nothing more could be done.

Of course the tragedy of losing all of our babies was beyond devastating, but their lives were so beautiful and so precious. There was an intensity to the love that I felt for them that I’d never felt before. That is what I like to remember about them. Ash and I had become parents and they were our children, and that never stopped being the case.

What do people not understand about losing a child, or children, to problems stemming for premature birth?
I think often people presume that the longer a baby lives, the greater the loss. People have even suggested to me that it would have been kinder on me if my babies had all been born when Henry was born, and they’d all have been born and died on that day. That absolutely couldn’t be further from the truth. My grief for Henry is as intense as my grief for my other boys. But I’m incredibly grateful that we had ten days with Evan and we had 58 days with Jasper to get to know them and create memories, and we got to know their individual personalities.

The second thing with baby loss is that people presume that you shouldn’t mention the baby’s name, I think for fear of upsetting the parent. I personally find that I love to hear my babies’ names spoken, and I love it when people want to listen to me talk about them. I think that a lot of other people I’ve spoken to who’ve lost babies feel similarly. That’s why I like to have shirts printed for people running on my team who’ve also lost a baby with their own baby’s name on their shirt, because I know how beautiful it is to see your baby’s name.

You completed your first half marathon nine months to the day after the birth of Evan and Jasper, and just six months after Jasper died; how were you able to harness the power of your grief and your pain into something so positive so quickly?
To me my babies weren’t here anymore, but I was still their mum, and I felt like I had a job to do to ensure that their lives mattered and meant something. Ash was the one who suggested to me that I run the half marathon and try to raise some money for the hospital in their memory. I remember on that first marathon day how proud I was of Henry, Jasper, and Evan, and how proud I was to be their mum, because I was running with a team of 98 people and our goal had been to raise $20,000, but we’d managed to raise $80,000 for the hospital.

You’ve talked about how you were in part inspired to push on by reading a poem on the Internet called ‘Mummy’; has the Internet been a valuable support resource for you? How are Internet communities changing the way we grieve?
Only a few weeks after Jasper died I found a poem on the Internet, and there were two lines of that poem that stuck in my head, and still stick in my head, actually. The line was: “Please don’t be sad, Mummy. Go on and live for me. It’s so important that you do, because it’s through your eyes I’ll see”. So when I read that, it just inspired me – to live my life, to go on, to go forward and live my life in honour of my boys, rather than give up on my life because I’d lost them.

The Internet was really quite incredible because I felt very lonely after we lost all our boys. The Australian Multiple Birth Association had a bereavement group for people who’d lost multiples, but this group had people who had lost one twin or one triplet, and for me I felt I was just in a very different situation because I’d lost all three over three months. I was looking on the Internet and I came across this US group called ‘Loss of All in Multiple Births Support’ (LAMBS) and I just couldn’t believe it. I couldn’t believe that there were other people like me out there, and there are actually many people out there like me who have lost all of their triplets, or both of their twins, and sometimes, like me, over extended periods of time.

I connected with that group and the support that I received from these people from all over the world was incredible. Then I was in turn able to offer support to people who came after me in that group. Even now, 11 years later, I’m friends with them.

Each year the amount of people involved in running for and donating to Running for Premature Babies grows; could you tell us about the network and relationships that have formed as a result?
Over the years many people have joined my team because they too have lost a baby. It has been really wonderful to be able to help people celebrate and honour the babies they’ve lost by doing something positive for others. When a baby dies everybody wants to help, but nobody knows what he or she can do. RFPB gives them something concrete to do.

People also join the team because we offer free running training, and because they want to run a half marathon but also to transform it into something bigger than their own race. Equally, we have many people running to celebrate their children who have survived. Last year we had the parents of five different sets of prematurely born triplets on the team. Some of these parents’ babies had only just come home from hospital, some of their children are already teenagers, but those parents are able to connect and network and support each other with the unique challenges that are presented when bringing up a child who has been born prematurely.

Is that difficult for you, connecting with parents whose premature triplets have survived?
To be honest, it’s been quite a journey for me. In the early days I did find that quite difficult because it accentuated my own loss, and for quite some time I found triplets extremely difficult. It was very rare, but when I did see triplets it was like somebody was stabbing a knife into my chest and twisting it around; the pain was unbelievable. But it gets easier. Last year I met up with five families and all of their triplets, and it felt really wonderful to know that four out of those five sets of triplets had used the life-saving equipment provided by RFPB and had thus benefited from Henry, Jasper, and Evan’s legacy.

Apart from the benefits of human connection, your organisation has managed to raise over $2,000,000 to provide lifesaving equipment for premature babies in the Newborn Intensive Care Unit at the Royal Hospital for Women; how has this money improved outcomes for premature babies?
The equipment that we provide is the very latest technology in neonatal care. We’ve paid for two neonatal ventilators, which enable babies even smaller than Evan and Jasper to survive, because they use technology that is very, very gentle on the babies’ lungs, and mean that a baby born at even 23 weeks gestation doesn’t actually have to be intubated. This makes all the difference to the babies’ lungs. If that machine had been available in 2006, Jasper probably would have survived.

Last year we raised funds for a special new x-ray machine that gets results instantly at the baby’s bedside. Time is of the essence in the life of a premature baby, and if doctors can get an instant result, they can solve the issue. All up so far we’ve provided 29 pieces of life-saving equipment. We also fund research into the advancement of the care of premature babies, and the doctors have told me how this research is as vital as the equipment. It’s not as tangible as the equipment, but it’s only with research that advances can be made into the care of premature babies and the challenges they face.

Moving forward, what will future funding go towards?
This year and next year we’re funding a completely new monitoring system that’s going to be installed in the unit, which means that the babies can be monitored from different stations, so when things go wrong doctors can be on top of it straight away. We’ve raised $2 million so far I’m hoping to raise another $300,000 this year.

How many runners are you hoping to attract?
I’m hoping for 500 runners. Currently, as of today, I have 394 registered. Last year we had 520, and that was our biggest ever. It was our tenth year, so we had a massive push last year. I want to back that up this year with another 500. So I need another 106 runners in the last month or so.

You’re now a mother to two healthy boys, Owen and Harvey. Owen arrived two years after the loss of your triplets, which must have been joyful, but hard, how did you balance the conflicting emotions?
I think when I was pregnant with Owen I was worried about balancing the grief and the joy, but the second he arrived it was a thousand per cent joy. I never worried about that again. I remember his first night in hospital and he was unsettled. One of the lovely midwives came in and said, “Would you like me to take your baby to another room so you can have some rest?” I was horrified at the idea of anyone taking my baby. I don’t think I put him down for six months.

Taking him home from the hospital I cried all the way for my boys who never made it home, and I cried tears of joy for this beautiful little boy who’d come into our lives and absolutely rescued us, really. Owen has never replaced the love for my triplets, and the grief is always there, but Owen’s helped us massively through that.

What are some of your favourite things about Owen and Harvey? What are their weird quirks?
They are so sweet and funny and crazy and wild, and they make life wonderful. They’re very different from each other, but they’re best friends. Owen’s sensitive and thoughtful; Harvey’s a bruiser and he’s got a wicked sense of humour just like his dad.

Speaking of your husband, Ash, he lost his battle with brain cancer last year; after another loss, what stops you from just crawling into a ball and giving up? How do you manage self-care amongst everything else?
Crawling into a ball and giving up is not an option. Ash battled brain cancer for seven years, and he never gave up. He ran the SMH Half Marathon with Running for Premature Babies right up to the end. For his final race, he had recurrent brain tumours and he was between chemo. It took him over three hours to complete the race, but he did it and he had such an amazingly positive attitude, and he never ever asked, “Why me?” Last year, after Ash died, I started training for the New York marathon, and by November last year I was the fittest I’ve ever been in my life, and for me that was self care.

I’ve also had amazing support from so many people like Bruce Scott, the ‘Body Magician’. People have reached out to help me in such beautiful ways; the Coogee Cougars running group has a roster going whereby every Thursday morning a different member of the group gives up their run to babysit for me at 5.30am, so I don’t have to miss out on running with this fantastic group of women. It’s the kindest thing anyone has ever done for me.

How have you taught your sons about grief and dealing with the loss of their father?
I think that I tried to teach Owen and Harvey by my example, that even when the worst happens, even when your heart is broken, you can pick yourself up and you can carry on, and you can still find joy in life. It’s not about forgetting their dad, it’s about living in honour of their dad, like Ash and I tried to do after we lost our three boys. Ash is very much a part of our present at home. We laugh when we remember memories, funny times we had together. Ash is buried in Waverley Cemetery. It’s a very normal part of our life to pop up to the cemetery and water the flowers on his grave.

Do you ever think ‘why me?’ or do you just not have time for that?
No, I think that’s a complete waste of time. People often tell me how unlucky I’ve been in my life, and I actually completely disagree. I feel like I’ve been incredibly lucky. I had the most amazing relationship with my husband. We were together for 15 years, married for 10. He was my best friend, an amazing husband, and an incredible father. We’ve been through enormous heartbreak, but we’ve also been through enormous joy, and we were there to support each other through it all. I’m now blessed with these two absolutely beautiful little boys and I wouldn’t want to swap my life with anyone.

Let’s talk about the task of running a half marathon; is it too late for people who want to get involved to put their hand up?
Absolutely not. There’s plenty of time. Every year we offer a training program that starts at the end of January and goes through to the race in May. This year we’re offering free training five days a week. We have our head coach, Mandi O’Sullivan-Jones, who’s designed our training program, and we have many volunteer trainers in Coogee Beach, Queens Park, Centennial Park, North Sydney, and the city. Rejoov Runners also offers free training to anyone on my team.
It’s 21 kilometres, so if you’re not already running then 21 kilometres might be out of your reach. However, there’s also the option to team up with a friend and split the kilometres. You don’t have to run the whole way, either. Ash did it with a head full of brain tumours. There are time cut-offs in the race, but a sort of jog/walk should get you through. You will receive a free cap and singlet, and all we ask in return is that every runner raises at least $200 for Running for Premature Babies.

How can people sign up to participate? How can they donate if they don’t want to run?
If you want to participate, you can just jump on the SMH Half Marathon website and register for the event, either for the 21-kilometres or for the relay. Just enter Running for Premature Babies as the team you’d like to join. Or you can contact me directly through my website. If anyone would like to donate, the link to our donation site is on our website. If you aren’t able to run the SMH Half Marathon, but want to run another event throughout the year, you can still fundraise for Running for Premature Babies. If you don’t want to run at all, but fancy swimming instead, we also have RFPB swimming costumes for sale.

I believe you’re about to become a registered charity; is that correct?
Yes, we’ve been going for 10 years just as a running group that raises money for the Royal Hospital for Women, but I’m now in the process of registering RFPB as a charitable foundation, and this way we’ll be able to expand the reach of RFPB to cover more newborn intensive care units around the country, and to give premature babies an even better chance of survival.

You obviously dedicate a lot of your time to RFPB; are there any other charities that you support or you’d like to give a plug to?
I’d love to give a shout-out to Can Too. Can Too was founded by Annie Crawford about three years before RFPB. They’ve now raised $15 million for cancer research. Annie Crawford is one incredible human being who has inspired thousands of people to achieve their fitness goals and raise money for cancer research. The other charity is Charlie Teo’s charity, Cure Brain Cancer. We were lucky enough to have Charlie as Ash’s doctor, and it’s because of Charlie’s brilliant work, and the work of Cure Brain Cancer, that Ash survived for seven years with a disease that usually kills people within one. When Ash was first diagnosed in 2008, Owen was six months old and we were told Ash would most likely live for one year, best-case scenario. Two years later we had another baby, Harvey, and Ash then lived for five years in remission. We had some amazing experiences together in that time and it means Owen and Harvey will grow up remembering their dad.

Are there any RFPB supporters that you’d like to thank?
RFPB wouldn’t be where it is today without the amazing support of the local community, particularly our head coach Mandi O’Sullivan Jones, Running Bare, The Running Company Bondi Beach, Rejoov Runners, Bondi Fit, the Coogee Cougars, the Great Aussie BBQ, Superheroes Inc, BT Investment Management, and The Spot 2B Hairdressing & Beauty, to name just a few. I’m also excited to announce that we’ve just been chosen as the charity partner of the Taste of Coogee festival later this year.

What are the words of wisdom you live by?
There’s a quote I like which is from Mother Teresa: “It’s not how much we give, but how much love we put into giving.”

In an ideal world, what does the future hold for Sophie Smith?
Running for Premature Babies never stops. My vision for the future of RFPB is that it will grow to be a successful charity that supports newborn intensive care units Australia wide, giving premature babies a better chance of survival and allowing parents to celebrate their prematurely born children, both living and lost.

Ash had an amazing ability to live in the present and not worry about what the future has to hold, and it’s something that I’m trying to learn to do. But in an ideal world, my life and the life of my boys will be filled with joy and love and health.

The SMH Half Marathon will be held on Sunday, May 21. For more information about Running for Premature Babies, visit www.runningforprematurebabies.com.