Sophie Smith shares her heartbreaking and inspirational story of the origins of the “Running for Premature Babies” movement.
In 2006, my husband Ash and I were amazed and delighted to become pregnant with triplets. However, our joy turned to tragedy when my waters broke, just 21 weeks into the pregnancy.
Five days later, our first son Henry was born, so beautiful and perfect, and looking just like Ash. He gave a tiny cry and was laid on my chest where, for one precious hour, I held him and felt his heart beating against mine. His tiny hands squeezed onto our fingers and then, he passed away.
Incredibly, Henry’s siblings didn’t follow their brother into the world that day. As intervention isn’t given to babies born before 24 weeks, we had a long way to go. But as the days passed, our hopes grew. At 24-and-a-half weeks, after three weeks of bedrest in hospital, my waters broke once again, and Jasper and Evan were born by emergency caesarean. They were immediately intubated and transferred to the neonatal intensive care unit at the Royal Hospital for Women in Sydney.
Weighing less than a kilo, we knew our boys had a long fight ahead. However, babies this small had survived before and we were optimistic. The first few days were promising. Both boys were taking my expressed breastmilk through tubes into their stomachs. We spent every day sitting by their humidicribs, marvelling at how beautiful they were and falling in love with them.
But when our babies were 10 days old, Ash and I rushed to the hospital in the middle of the night as Evan had taken ill. We sat with him through the night and in the morning, learned that he had suffered a severe brain haemorrhage.
Heartbroken, we had no choice but to remove him from his life support. We told Evan how much we loved him and kissed him, and he slipped away while he was in my arms. That was the first time Ash and I had held Evan.
Sophie and husband, Ash, with 14-day-old Jasper on the day he opened his right eye for the first time.
Over the next few weeks, Jasper began to grow stronger. Amidst the worry and sadness of this time, we also have some beautiful and happy memories of our time with him. There was the amazing day that he opened his eyes for the first time, the handful of times we were allowed to take him out of his crib for a cuddle and the time I gave him one precious breastfeed.
But, like many premature babies, ours had chronic lung disease. Jasper’s lungs kept collapsing and many times over the next few weeks, we came close to losing him. However, each time he amazed his doctors and fought on.
At 58 days old, Jasper’s lungs collapsed again, but this time he could not be revived. Once again we took our baby out of his crib and held him while he passed away.
The days and weeks following Jasper’s death were terribly hard. When I should have been run off my feet looking after three tiny babies, I was instead facing maternity leave with empty arms. Ash and I talked about them all the time, and about the incredible love that they had brought into our lives.
We were determined that their deaths would not be the end of their stories and that something good would come from their lives. To help me get through the days, Ash suggested I train for a half marathon and dedicate it to Henry, Jasper and Evan, raising some money for the Royal Hospital for Women in their memory.
Ash’s idea came about because when our babies were in hospital, we learned that most of the machines that kept our boys alive were donated and that the hospital relies on fundraising for 70 per cent of the equipment in the unit. So we started a quest to gather a group of people to run the SMH Half Marathon and raise $20,000 for one new humidicrib for the hospital, in memory of our boys.
What happened from there totally blew me away! Four months later, I was toeing the start line of my first half marathon with a team of 98 runners and together we raised $80,000! The following year, I found myself doing it all over again and this time many people in my community put up their hands to help. It became an annual event, and more and more people joined us each year with their own stories of prematurity and baby loss.
As the years passed and we provided more life-saving equipment to the hospital, people began to join whose own babies’ lives had been saved with the help of the equipment we’d provided.
Two years after losing our triplets, and six months after welcoming our fourth son—a big, fat, beautiful bouncing baby called Owen—tragedy struck my family once again. Ash, then 36, was busy training for the upcoming SMH Half Marathon, and hoping to beat his personal best of 99 minutes. He began to have debilitating headaches and to our utter shock, was diagnosed with an aggressive form of brain cancer with a grim prognosis.
Instead of spending his time worrying about what the future had to hold, Ash got on with living in the present. He approached his illness with a courage I’ve never before seen and refused to let it get in the way of us enjoying our lives. He defied the odds and returned to full health, and we became parents once again to another son, Harvey.
However, when his cancer reared its ugly head five years later, he never asked, “Why me?” and he never gave up. He even continued to run the SMH Half Marathon in Sydney on our Running for Premature Babies team between surgery and chemo—it took him over three hours to complete his last race in May 2015, but he did it! He endured countless surgeries to remove recurrent tumours, chemo and radiotherapy, but eventually no more could be done to save him and he passed away on February 20, 2016.
Ash and Sophie at Ash's final race after recurrent surgery, chemo and radiotherapy.
Ash taught me it’s never OK to give up and so after he died, I threw myself into the work of Running for Premature Babies. Three months after Ash passed away, I ran the SMH Half Marathon with a team of 500 runners—double the number we’d ever had!—and took three minutes off my personal best.
Six months later, I fulfilled a long-term dream Ash and I had: to take a team of Running for Premature Babies runners to New York to run my first full marathon to celebrate what would have been Henry, Jasper and Evan’s tenth birthdays.
Early on the morning of the race in New York, I wrote all the special names Ash and I had for each other up my arms and, when the going got tough during the race, I read them and felt Ash and our boys push me on. It was an incredible feeling to cross the finish line in Central Park and dedicate my run to Ash.
Ash and I had spoken about registering our running group as a charitable foundation and a few months after his death, this became a reality.
Looking back, I never dreamed that our idea to raise $20,000 for one humidicrib would grow like it has and that we would become a registered Australian charity that has so far raised more than $3 million to give premature babies a better chance of survival. To date, we’ve inspired approximately 3500 people to run a half marathon, and the money we’ve raised has provided 45 pieces of life-saving equipment and funded research for neonatologists to unlock the many mysteries of prematurity and advance the care of premature babies for the future.
Today, with the help of the new equipment we’ve funded, babies born as early as 23 weeks can be saved and a baby born today at 24 weeks has not a 50 per cent but a 70 per cent chance of survival. The doctors at the hospital have told me that more than 4000 babies have so far benefitted from the new equipment we’ve provided and some of the very sickest babies may not have pulled through without it.
Last year, I’m proud to have co-authored my memoir Sophie’s Boys, as I wanted to share my story to show how even in tragedy, something beautiful can be born. I’m also humbled beyond words to have been announced in the recent New South Wales (NSW) Australian of the Year awards as 2019 NSW Local Hero. My goal is to grow our charity to create running communities around our country to support more hospitals with neonatal intensive care units so babies born prematurely in Australia have the best possible chance of survival.
Ash in remission after the birth of Harvey
As I write this, I’m aiming to gather a record-size team (600 people) in the Sydney Half Marathon on May 19. We are also putting together teams in the Brisbane Marathon in June, the Gold Coast Marathon in July, Sydney’s City2Surf in August and the Annapurna Marathon in the Nepalese Himalayas in October!
Running for Premature Babies is a community open to everyone, be they seasoned runners or complete beginners, whether they have a personal connection to prematurity or baby loss, or whether they’re lucky enough never to have been touched by prematurity. Those interested can either run in one of our team events, run any event of their choice around Australia, donate or fundraise for us.
When we first started Running for Premature Babies, I remember thinking that nothing I could do would bring my babies back, but it was up to me as their mum to ensure their lives mattered. This is why I am committed to working to grow this charity to support more premature babies, provide more life-saving equipment and fund more groundbreaking research, to ensure that more families get to take their babies home.
The Running for Premature Babies team last year.
Sophie’s Boys is published by Affirm Press and is available at all good bookstores. All profits from the book are donated to Running for Premature Babies.