It’s every new mother’s worst nightmare: finding out your newborn child might die before she reaches her first birthday.
This article was first published in print and online in Go Festival Magazine, 2016.
I’m sitting in Lauren Tyrrell’s lounge room in Kurunjang, near Melton. Four-year-old Ava, a cheeky blonde toddler, is clambering on her mother’s lap, panting for attention. Lauren, a mother of three girls between the ages of four to eight, is a diminutive young woman with clear, soulful eyes that have seen loss and adversity beyond their years.
I’m here to interview Lauren on winning the GO Festival Cover Girl competition. But chatting with her reveals a much deeper story. We go back to a moment in her past — just days after the birth of her first child, Makayla — when the news comes through that Lauren’s twenty-three-year-old sister had been killed in a car accident. While you’re imagining the horror of that revelation, here’s another kicker: Lauren’s younger brother, Dylan, was also killed by a car at only five years of age.
Perhaps most people in Lauren’s shoes would fall apart. Completely justified. But for Lauren and her husband Mark, life had already handed them another crisis they needed to be present for: their fragile, seventeen-day-old baby was in the ICU unit of the Royal Women’s Hospital recovering from open heart surgery.
‘We’re not terminating!’
How did this happen? According to Australian statistics (provided by heartkids.org.au), every day eight babies are born with a heart defect. That’s almost 3,000 a year. Makayla was one of those statistics. Twenty weeks into Lauren’s pregnancy, an ultrasound revealed that Makayla would be born with only half a heart. ‘They asked me to terminate,’ says Lauren. But Lauren and Mark chose to face the odds.
Braving their fears was one thing, but additional, unexpected pressure came from hospital staff. Lauren shakes her head. ‘Legally, they can ask you to terminate up until you go into labour.’ Lauren was constantly asked until she was thirty weeks pregnant, at which point, feeling harassed, she finally told them to stop asking. ‘We’re not terminating our baby!’
‘Five minutes with your child is better than wondering, so we chose to give her a chance.’
I ask Lauren if it was a firm held belief system that influenced her and Mark’s choice not to terminate Makayla, when they had the opportunity. ‘No. I don’t know, it’s just that … my brother passed away, and if he’d survived … I look back at that and think, mum and dad didn’t know he was going to die, and even if they did, they still had five years with him, so when we got pregnant with Makayla, I thought of Dylan and … anytime is better than no time at all.’
You can understand why Lauren and Mark, who met during their years of being SES volunteers, clung to their pregnancy, even if their first born might only have a thread-thin chance of survival. From the start, Lauren and Mark knew Makayla would need three open heart surgeries: one within seventeen days of her birth, another at ten months — once she had a chance to grow — and a third at four years. I ask Lauren how she coped. ‘I don’t know,’ she says, looking wistfully at young Ava who is wobbling a loose tooth, keen for a visit from the Tooth Fairy. ‘I can’t imagine going through that with Ava now. But you just do what you’ve got to do. We know a lot parents with kids who haven’t made it, so we’re very lucky.’
Is it cruel?
Did friends judge them for bringing an impaired child into the world? ‘They thought we were being cruel at first. But not anymore. We’ve had people apologise to us since. My family were really good. They supported us. Mum came to appointments with me. People didn’t want us to have pain, I guess. What can you do? You just have to stay positive.’
I ask whether genetics played a part in Makayla’s condition, and if there was a risk of a repetition with her subsequent children. ‘No,’ she says, ‘20% is genetic and 80% is unknown. We were one of the unknown.’
Always on call
To add to this family’s struggle, since February 2015, Lauren has been bringing up their three daughters on her own. Mark has been working interstate at various remote indigenous clinics in the Northern Territory, Queensland and Western Australia. ‘An opportunity arose with better pay — nurses don’t get paid well in Victoria,’ says Lauren. ‘He also gets treated better there as a male nurse working in a female-dominated field. He’s not indigenous, but he likes helping in that area.’ The couple stay in contact via Facetime.
How does she cope with being an almost a single parent? ‘The first two weeks were hard,’ she says. ‘I began to realise how much he did around the house — the simple stuff you take for granted like taking out the bins. But I’m used to it now. I have a really good routine.’
Both Lauren’s and Mark’s parents live close by in Melton. And although they work as well, they help out if Makayla gets sick. ‘I can call my mum anytime. 11 p.m. at night. Even if she’s not awake she’s like, “I’m awake, I’m awake!”’
The trouble is, when Makayla does gets sick, unlike most children, she gets drastically sick very quickly. And that’s why Lauren is unable to work — she has to be always on call. ‘It wouldn’t be fair to an employer’. Recently, Lauren had to miss graduating from a training course when Makayla became sick on a school camp. ‘I brought her back from camp and the hospital rushed her into Resuscitation, she was so sick. But we’re in really good hands and the ambulances are really good too. We’re very lucky.’
“Very lucky” is a phrase that’s become part of Lauren’s regular vocabulary. Empathy and positivity run through her veins. At every turn she’s been grateful for each little piece of help and support she and Mark have received. Complaining isn’t an option, even when Mark comes home on precious leave and finds he’s unable to spend time with his family: ‘One time he came home and Makayla was really sick with a virus and ended up in the Children’s Hospital. He only saw us for a day that time.’
For a fair period of Makayla’s life, the couple have been ineligible for a government carer’s support allowance, hence Mark having to accept work further afield. Luckily, that has now been resolved, due to Makayla being diagnosed as having a learning difficulty. But again, Lauren’s not one to complain. ‘Besides the hospital trips, parking and other out of pocket stuff, all the surgeries have been covered by Medicare. We’re very lucky.’
‘It’s scary. We won’t know anyone.’
As we speak, Lauren tells me Mark has applied for a position at a not-for-profit clinic in Northam, WA, again working with an Aboriginal community. Lauren is facing the prospect of relocating the family to regional Western Australia. How does she feel about that? She’s not thinking about it — it’s too daunting. ‘But it would be good to have a life change,’ she says. ‘See a different part of Australia. I’ve only ever seen Melton.’ She turns to look at Ava who is now watching Doc McStuffins on DVD. ‘It’s scary,’ she adds, ‘because we won’t know anyone. But we’ve got the kids.’
Looking ahead, Lauren isn’t sure whether Makayla will need further surgery. But eight years on, between regular doctor check-ups, their eldest daughter is a happy, functioning child, who loves to go to school, attend camps, and do all the things other kids like to do — maybe at a slower pace, but nevertheless, she’s still here and she’s loved just as much as her sisters, Alexis and Ava.
What advice does Lauren offer to other parents in her situation? ‘Stay positive. If you think about what could happen, you’re never going to live life at all. We’re just very lucky. When I write things on Facebook, people always say “you’re so positive all the time”. We don’t want people to feel sorry for us.’