Wednesday, September 27, 2023

Infant Loss: ‘Your Grief Stays The Same Size, But Your Life Grows Around It’

A pink circle with a remembrance ribbon in it, representing baby loss and infant loss

This week is Baby Loss Awareness Week and here at Capsule we’re committed to sharing the stories and information about this topic which is SO important, yet so rarely openly discussed. Today, we talk to Jo about her eldest child, Jasper, who died 12 years ago as a baby. Jo talks living with long-term grief and how her heart has grown around that experience, how she remembers her eldest son and how therapy and friends played such a big role in helping her and her family gain more peace around the loss of Jasper.

If someone asks Jo Clements – a 46-year-old graphic designer from Auckland – if she has children and how many, she tells them she has four. If that person enquires further, she’ll tell them about Sonny (10), April (9) and Arlie (7) – and that Jasper, her eldest, died as a baby.

“So sometimes I end up telling a stranger the story. I’d feel guilty if I didn’t include Jasper [when asked about her children]. I’d feel like a bad parent – and Jasper’s part of the family. Part of our lives. He’s another child. We celebrate his birthday – and have very open conversations about Jasper with the other children.”

Jo and Jeff, who are from Auckland, lived in London from 2005 to 2010, the year when they had their first child. “Jasper was born healthy. There were no signs of anything being wrong with him. We had 33 normal days. I was overloaded and overwhelmed having a newborn, like usual, right? He was breastfed, he was loved, he was cared for, and on the day he died I went for a walk in the park. I saw other mums and babies. I pushed the pram home. He was sleepy. I put a few things away in the kitchen, came back out and he was blue.”

“The ambulance collected me – they kept him breathing – and we were in the hospital within 15 minutes. We spent probably two-and-a-half hours there while they tried to work out what was going on. He had bleeding in his lungs and they didn’t know the cause of that. He died later that evening.”

The cause of death remained unclear. That was hard. “But now, looking back, I don’t think having answers would have made a difference to how hard it was or helped me process it any faster. The result was still the same: I didn’t have a baby.”

Family and friends funded two memorial benches – one in Brockwell Park in London (where she took Jasper for walks) and one in Auckland Domain. That’s where the family marks Jasper’s birthday with a picnic. Jo shares photos of that with friends on Facebook, because that’s another way to ensure he’s remembered.

When she tells people about Jasper, how do they react? “Some cry. Some disclose their own loss.” Others just don’t know what to say. Have any responses included ‘you can have other kids’ and ‘you need to stay positive’?

“Yes. You could feel bitter about hearing those things, but I don’t feel that way, because I know everyone has good intentions. There’s always that layer of grief, but if you feel frustrated about people’s reactions, that adds another layer.”

“Friends who know me well are comfortable saying Jasper’s name and bringing him into conversation as if he’s part of my family. I appreciate that”

“When you go through baby loss, so many people in your life know about it. You might not see someone for a couple of years, then you catch up and they want to talk about it. I think – and I’m probably doing this now – that I come up with a mechanical way of explaining things, so I can put out what I need to without crying or getting too emotional. I’ve repeated this story to a lot of people. But sometimes I’ll talk to people and get upset. Friends who know me well are comfortable saying Jasper’s name and bringing him into conversation as if he’s part of my family. I appreciate that.”

Why agree to talk to Capsule about this? “Awareness about baby loss is extremely important and it’s something that needs to be talked about. Baby loss comes in all shapes and forms: stillbirth, death after birth, cot deaths, miscarriages – it’s all on a spectrum.”

“What would I tell people? Try to access therapy. In my opinion, it can save you. In London, we had a liaison bereavement nurse who helped us do the practical, day-to-day things needed when someone dies. We were also offered free therapy for a whole year, with a psychotherapist. We weren’t in London long enough to have more than a couple of sessions.”

“Back in New Zealand, we didn’t know how to tap into anything. I got a little bit of counselling through SANDS NZ [a network of parent-run groups supporting families who have experienced baby loss], but it was too low-level for me. But through SANDS NZ, I met other parents who’d gone through similar loss, and being able to talk to others who understood was beneficial to healing.”

“I’m 12 years down this track, and if anyone reading this is in those very raw stages, I’d like them to know there are other parents out there who can survive this.”

“Signs of the trauma really came through when I had Sonny, then April. I didn’t realise I was broken until I had April. I had a bit of a breakdown. I managed to access therapy through Maternal Mental Health [a DHB health service]. I only found about it accidentally. I wish Plunket, a doctor or a midwife had thought to mention it as an option early. So when I went to therapy, we had to do work on four years of embedded trauma. It was very much needed. I was eventually diagnosed as having post-traumatic stress. Now, I know how to manage it so life feels far more regular. But there will always be those hard, infrequent moments to work through.”

“Imagine you have a circle of grief, then a circle of your life around it. The circle of grief stays the same size, but the outer layer grows wider as your life around it gets bigger. I’m 12 years down this track, and if anyone reading this is in those very raw stages – the first years, months, days – I’d like them to know there are other parents out there who can survive this. At the start, getting through a minute at a time was quite something. Then it expanded: I can get through this hour, this day, this month.”

It’s not something you can get over. “But I could become a little bit more at peace with it.”

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