When Alice’s twin girls died when she was 25 weeks pregnant, she found herself searching for somewhere to place their names, their story and her grief.
Following the death of her twins, Alice discovered Twins Trust’s Bereavement Service and felt supported when she found other bereaved parents who had faced a similar situation.
“I contacted Twins Trust’s Bereavement Service to have the girls’ names put on the webpage with other babies who had passed away. It made me realise I wasn’t alone. I follow the Bereavement Service Instagram page and it really helps me and gives me comfort knowing that we aren’t the only parents who have lost two babies at the same time,” she said.
For families experiencing the loss of a baby or babies, support can feel hard to find, especially in the first days and weeks when everything is raw. Twins Trust has dedicated bereavement information and services, as well as stories from other parents, which can help people feel less isolated and more supported in their grief.
The emotional weight of uncertainty
Alice discovered she was pregnant in April 2022, but after experiencing a bleed, she assumed the worst. She said: “I was feeling quite ill and the hospital wouldn’t scan me so we went for a private scan and we found out we were having identical twins. It was a big shock.
“At one of our scans, they said to us that twin two was always sucking her thumb. Then at the 19-week scan, they realised twin two couldn’t move her arms and legs. She was diagnosed with arthrogryposis. The doctors said to us at the time as they were identical twins, the other twin will probably develop it. They said there was something wrong with her stomach. They gave us the option to have a termination but we felt we didn’t have enough information. We had a double amniocentesis test, to check the babies for any genetic conditions.”
As the pregnancy continued, Alice and Adam were trying to take in complex information, make decisions with limited clarity, and hold on to hope at the same time. Like many parents of multiples, they were navigating not only medical appointments and scan results, but also the emotional weight of uncertainty and the pressure of having to decide what felt right for their family.
When concerns weren’t fully heard
When Alice experienced reduced movements with one of the twins, she went to hospital. She said:
The midwife didn’t scan me but listened to the heartbeats. She said there were two heartbeats and it was fine. I went back to fetal medicine for a planned meeting. I asked to be scanned but they said I was being scanned too much. I went back for a scan a week or two later and twin one, who was our healthy twin, had passed away.
The loss of one baby changed everything. Following the tragic death of twin one, Alice and Adam made the decision to terminate twin two. They were told there was a high chance twin two would be severely brain damaged, as well as having arthrogryposis, because the twins shared a placenta. They felt it was the kindest decision they could make in impossible circumstances. They named the twins Zara and Matilda.
Navigating Grief booklet
The journey through grief can be incredibly difficult. Our Navigating Grief booklet is here to support all parents who have lost a baby or babies.
Their legacy will carry on
After giving birth, Alice learned more about what had happened. Alice added: “When I gave birth it was quite clear twin one had passed away when I went in for that earlier scan, she had passed away at around 23 weeks. When we got the results of the post-mortems, we discovered that Matilda had passed away due to acute Twin-to-Twin Transfusion Syndrome (TTTS) and sIUGR. This had not been picked up on in previous scans due to the nature of acute TTTS often being unforeseen. Our poorly twin, Zara, had 70% of my placenta and our healthy twin, Matilda, only had 30%. We always knew that one baby was always smaller than the other but it was never looked into.”
In the aftermath, Alice remembers being handed information but still feeling unsure where to turn. She said: “I think after the twins passed away we were given a Twins Trust leaflet. I heard about the Bereavement Service when we were given lots of leaflets when they died. We just didn’t know where to turn.”
It remains important to Alice and Adam, who are now parents to baby Nelle, to keep the girls’ legacy alive, and sharing their story has become part of that.
Alice added: “You find comfort in hearing other people’s stories and knowing you aren’t on your own. We talk about Zara and Matilda all the time – we never stop talking about them. We mention them to people I don’t know and love seeing their names written in places. We love them and they are still our babies, but they are not here for us to look after. Sharing their story and potentially helping other families is their little legacy. We keep them alive by talking about them.
“Lots of people will hear their names and know their story and know that they lived – and that’s so important to us. They did live inside me for 25 weeks and five days, and their legacy will carry on with us for the rest of our lives.”
Online community
Our online support community offers a safe space for parents to talk to others who have experienced the loss of a baby or babies.
