“We lost some friends who didn’t know how to relate. And then you’re grieving your friends simultaneously as grieving your lost child.” Rowena – Zach’s Mum
In 19 hours, Rowena and Tony went from being besotted parents of newborn Zach to members of the bereaved parent’s club.
When Zach woke up from his nap a little unsettled and with a mild temperature, I could not have imagined I would end up experiencing this isolating and painful void.
As first-time parents, Tony and I took the cautious approach. We took Zach to the GP to get him checked. Zach didn’t seem to be particularly unwell, so the GP sent us home and told us to keep an eye on things. It was Tony’s birthday, so we went down to the local pub for a birthday lunch with friends. We checked on Zach regularly, keeping an even closer eye than usual.
At one-point mid-way through lunch, Tony leaned over to check on Zach and noticed the very early signs of dangerous meningitis (sepsis) rash and said to me, 'We need to go. Now.’
We quickly just grabbed everything, got in the car and sped to the hospital, which was about 20 minutes away. Tony said ‘look at his foot’, and there was the beginning of a meningococcal or meningitis rash on his toe. I didn’t realise, but Tony had seen that before because sadly, one of his friends had died from meningitis, and he knew what it looked like.” In the hours that unfolded at the hospital, things changed rapidly.
The doctors and nursing staff in emergency knew something was terribly wrong. They rushed him out the back cut his clothes off him. Then, suddenly, there were so many doctors and nurses, and they pretty much pushed us out. There were just too many people in there. It was all a bit of a blur. Hour after hour passed. No one told us anything other than ‘he’s very sick.’
Initially, the doctors thought Zach had a form of meningitis, although they needed to run more tests to confirm. After a long night of worry, news came that his vitals were looking brighter. The seizures he’d been having had reduced, along with his excess fluid retention. And his heart rate had settled. We were told they needed to do another brain scan to determine the next steps, whether to send him to Townsville or Brisbane.
Again, hours and hours passed.
We wandered out to the lawn of the hospital grounds and for the first time in a day and a half, we stopped and took stock of what was happening.
But that reprieve was over all too quickly as we looked up and saw Zach’s doctor running down the hospital’s external staircase and across the lawns to reach us. We returned to Zach’s room, where we held him in our arms. He held on for about 30 minutes more and took his final breaths.
Not long after Zach’s passing, results showed he had a very rare condition: Group Strep B Late-Onset. Had we known earlier how serious things were, perhaps we could have gotten Zach to the hospital earlier, and those results might have come through in time to make a difference.
But of course, there are many what-ifs in circumstances like this.
As the days, weeks and months unfolded, I found I didn’t know quite know what to do with myself. I went back to work three weeks after Zach’s death. I’d been on maternity leave with an all-consuming infant, and now suddenly, all this empty time stretched in front of me. I needed to keep busy, so back to the office, I went.
Mostly my team were wonderful, and they all tried their best to support me. They helped a lot with organising things for the funeral, they donated money to SIDS and Kids (Now Red Nose). They also helped us out financially with the funeral, which was incredibly generous. But a lot of people were apprehensive and concerned about upsetting me. I’d come into the office, and it was like the parting of the seas. In the end, I sent an email out to the office to say, ‘I’m okay. I’m not going to break into tears if you say his name.’ After that, everyone seemed to feel more comfortable. They started to include me in daily activities again, both inside and outside work.
But not everyone knew how to handle the situation.
It’s the elephant in the room. We lost some friends who didn’t know how to relate. And then you’re grieving your friends simultaneously as grieving your lost child. Now I look back and think, I get it...
It was a lonely and isolating time.
It took about six months for the reality of the situation to hit. There came the point where many people in my life expected me to be ‘moving on. Perhaps they were experiencing some form of ‘carer’s fatigue’ or a simple lack of understanding of how grief works.
The truth is, grief does not operate on a timetable.
But it was at this time I needed a support network as I was finally able to start facing the devastating loss of Zach and all that it meant.
And this is where Red Nose, including Sands, came in.
They’d contacted me via a hospital social worker early on – when Zach’s loss was still fresh – and offered help. I hadn’t been quite ready for it at the time, but as I began to come out of the time of ‘numbness’, I knew I needed to talk to people who had some idea of what I was going through.People don’t understand a lot about what they do. Beyond education for new parents, carers and health workers, they provide counselling services to bereaved parents or families of children who have died suddenly, from all types of sudden deaths.
They invited us to various events and helped us discover ways of being involved. Some of the events we attended, others I felt would be too painful. But I appreciated the gesture.
Every year they’d send a message on Zach’s birthday and anniversary to say ‘we’re thinking of you.’ They were just amazing. They are trained professionals and have peer support available 24 hours, 7 days a week. They weren’t just available for me and for Tony, but also for my family. They were even supportive for my colleagues.
Being a bereaved parent can feel like a lonely thing. It’s an incredibly lonely thing. It’s like you’re walking around with, well, no one can see the label you’re attached to. No one can see I’m a mother that’s grieving. Zach died in May and by the time Christmas came around it was incredibly hard because I’m seeing all these families out with their babies having Santa photos.
The world kept turning, even though I felt like it should have stopped. For a long time when I saw that nappies were on sale, I had to remind myself we didn’t need them anymore.
This May, it will be 17 years since Zach’s death. He would have turned 18 in February, perhaps heading into year 12. And not a day goes by that I don’t think of him. Day to day life is more manageable now, I do think of him, but it doesn’t distract me as much during the day. Though some days the anxiety catches up with me and it’s hard. Anniversaries are worse than they’ve ever been.
I feel like I suffer more each year. It’s the wondering what could have been. I drive past the high schools and think ‘what would he be doing now?’” Anniversaries, Mother’s Day, birthdays, Christmases… they’re hard, every year.
With Zach’s picture on my desk, his ashes in our home and his name tattooed on my back, Zach, my firstborn, is never far from my thoughts. It's important to acknowledge that for many families, loss is the beginning and end of their story. With up to one in four pregnancies ending in miscarriage, and about 1 in 100 pregnancies ending in stillbirth or newborn death, many never go on to have other children after the loss of a child.
I’m not one of those little ones, I did get the chance to have a rainbow baby, many years later. My second son Max, knows of his ‘older brother Zach in heaven’ and talks of him often.
I’ll be honest before I lost Zach, I thought Red Nose just supported families who had lost a little one to Sudden Infant Death Syndrome. It’s not. It’s all sudden infant deaths, regardless of the cause of death. They support any family that had lost a child. From conception to birth, and beyond.
One of the things that I really needed was other parents who had lost children. They connected me with a woman who had lost her little one a few years before we lost Zach. That peer support was something I really needed.
When we visited Brisbane a few times, we went to the Red Nose House at Mt Gravatt. They had organised a plaque for Zach in their Angel Garden. went to the Red Nose House at Mt Gravatt. The organisation had arranged a plaque for Zach and they put it in the Angel Garden.
I now volunteer as a peer supporter.
Join with us in saying Zach’s name this 25 March on Say their name day.
Say Their Name Day is on 25 March – a special day to remember all of the little lives we have loved and lost, and support bereaved families.
