As we remembered every baby who died too soon at the Wave of Light marking the end of Baby Loss Awareness Week 2026, our Director, Nikki Peterson shared her experience of her daughter Rosie’s death 20 years ago, both at NHS baby loss study days and on BBC Radio Sussex.

Adapted from her recent talks and her radio interview Nikki shares what she still remembers about the care she received, the kindness and the moments that hurt.

You can hear Nikki’s interview on BBC Radio Sussex here (from 1hr 38mins). It’s on BBC Sounds until 12th November 2026.

This post includes details of a baby’s death in neonatal care.

When I was preparing to speak at an NHS baby loss study day ahead of Baby Loss Awareness Week 2026, I wondered at first whether someone more recently bereaved might be better placed to share their story.

The more I thought about it, the more I realised there was something powerful in the fact that, 20 years on I still remember exactly what was said to me, and how it made me feel. The good and the bad.

Speaking on the radio was different. It’s hard to know what you’ll be asked…. connecting the here and now with my memories of 20 years ago, all whilst speaking live.

On air, I said: “I appreciate Baby Loss Awareness Week so much. I’m never, ever going to forget Rosie, and those of us who have experienced baby loss know what it is. But it’s about being able to talk more about pregnancy loss and educating people.”

This is a personal account of loss – of course any experience is unique. Some of it is a hard read, and it isn’t easy for me to tell – but these are the details I remember, and telling it this way is an important part of my story.

Twenty years ago

Twenty years ago, in April, I was pregnant with my first child. It had been a normal, healthy pregnancy. One morning I woke up in a bit of pain. I went to work, and the pain continued.

I had a midwife appointment that afternoon and had purposely left my maternity notes at home. As the pain got worse, I called the triage unit, who suggested I come in for a check-up. A colleague kindly drove me. When I said the pain was coming in waves, he suggested, as a relatively new dad, that I might want to time them. It didn’t really sink in what he was getting at.

At the hospital, one of the midwives was pretty moody with me for not having my notes. I can still remember the eye roll.

I called my dad to bring them in, and by the time he arrived everything had changed. I was rushed from triage to the labour ward with what seemed like a million doctors and nurses around me. A nurse asked for my husband’s number so he could come in urgently.

I was 23 weeks and 3 days pregnant. A neonatal consultant knelt down beside the bed and explained what might happen. If my baby showed signs of life, they would support her and intervene. If not, they wouldn’t, because she wasn’t past 24 weeks. He was incredibly kind and gentle. As I remember it now, it was almost as though he was holding my hand while he told me the harsh reality of my situation. He didn’t stand over me, and that made a difference.

I can still hear the clock, tick tock, tick tock.

I remember the labour pains, and asking myself, “Is this even worth it?”

My daughter Rosie was showing signs of life. She was whisked away immediately, and the team worked on her and transferred her to a bigger hospital as soon as they were ready. My husband drove me down. On the way I called a friend, who couldn’t believe I’d just had a baby and was now in a car on the way to another hospital.

Rosie – just too little to survive

I was given a room on the labour ward. It felt wrong to be surrounded by healthy babies and their mums.

I don’t remember much about the staff there, because I spent most of my time on the Baby Unit. We were told from the start that Rosie’s chances of survival were slim because of her gestation.

Every time we had an update, I could have whoever I wanted in the room. That mattered, because much of the time I wasn’t really hearing what I was being told. I didn’t have the capacity to ask questions.

Over time it became clear that Rosie’s brain had been severely damaged during birth and that she was too little to survive. We were given that news as kindly as possible. We made the incredibly difficult, and in some ways easy, decision to withdraw medical support.

Holding her for the first and last time

The first time I held my baby was going to be the last. The staff told me what might happen and how long it might take. They asked whether we’d like to dress her, and in what. They explained what would happen once I thought she’d taken her last breath. A nurse who had cared for Rosie a lot stayed in the room with me the whole time, and that was a comfort.

I was given the chance for anyone else to come and see her and hold her.

I didn’t take any photos, and I wish I had. The neonatal team offered to make Rosie’s footprints, and I threw them away because I couldn’t cope with them in the house. That was another choice made in the moment that I regret.

If you care for bereaved families, please know this: what doesn’t feel right now might feel right later.

Once Rosie had taken her last breath and a consultant had confirmed she had died, I wanted to be with my family in another room nearby. I was literally chased down the corridor by a consultant who needed me to sign something. I wasn’t prepared to sign anything, and I didn’t want to be chased down a corridor.

In the days after, I saw my GP, who referred to Rosie as a miscarriage. It felt medicalised, as though she wasn’t human and had never existed. It completely invalidated my feelings.

I will be forever grieving Rosie. It’s a lifelong process.

Tiger, born at 28 weeks

Three years later, I was in a similar situation, but thankfully with an entirely different outcome. This time I was 28 weeks pregnant.

My second daughter was born and transferred to the hospital’s baby unit, where the staff had purposely put her in a different incubator from the one Rosie had been in. That felt powerful, thoughtful and considered. Tiger is now a happy, healthy 17-year-old.

Twenty years on

Rosie would have turned 20 this year.

Last month I walked 55km of the South Downs Way in her memory. The months of training gave me hours on my own that felt like time with her, and I felt privileged to have that. When the walk was over, that connection went too, and I found myself grieving again.

“I just felt privileged that I had that time to really connect with her.”

During the week, I sat on the beach at the end of the day and the very first stone I saw was a heart. Some days, love is something you stumble across rather than look for.

Every year is another year she’s not here. I hate September, with all the school photos and the kids on the doorstep. I never got that with Rosie. She never did her GCSEs or her A-levels, and she’ll never go off to university.

There are always reminders of everything Rosie didn’t have, and that I didn’t get to share. I will be grieving her forever; it’s a lifelong process.

Grievers need support

As a society, I think we’re very grief illiterate… Grievers need support.

That’s why SLOW exists.

Our founders, Nic and Susie, set it up 19 years ago because the support they were looking for wasn’t there. Today I lead SLOW, which supports bereaved parents and siblings when a child of any age has died, whatever the circumstances and however long ago.

Every one of our facilitators has lived experience. The parents and siblings who come to us all wish they didn’t have to, but they find a lifeline: a room where they don’t have to explain themselves, because everybody gets it.

I get to take Rosie to work with me every day. She’s my superpower, and she will always be by my side.

As part of the Wave of Light at 7pm on Thursday 15th October 2026, we lit a candle for Rosie and for every baby who died too soon.

If you care for bereaved families in your work, SLOW also provides training for NHS staff on how best to support families when a child dies.

Drawing on lived experience, it covers the moments families remember for years, the kindness and the words that hurt. To find out more email nikki@slowgroup.co.uk.

If Nikki’s story has stirred something for you personally, you’re not alone.

SLOW offers free, peer-led support groups for bereaved parents and siblings when a child of any age has died, however many weeks a pregnancy lasted, whatever the circumstances and however long ago. Every one of our facilitators has lived experience of child loss, so you won’t have to explain yourself.

Our groups meet in person and online. There’s no pressure to talk; many people simply listen at first.

If you’d like support, or want to find out more about SLOW, you can fill in our self-referral form here. A member of our team will be in touch.