2 October 2024
Alice lost her twin girls when she was 25 weeks pregnant. She helps to keep their legacy alive by sharing their story with others, in the hope of helping anyone who might be in the same devastating situation.
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. She said: “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.”
Alice discovered she was pregnant in April 2022 but following 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.”
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.”
Following the tragic death of twin one, the couple made the decision to terminate twin two, as there was a high chance that she would be severely brain damaged as well as having arthrogryposis due to her sister passing away and them sharing a placenta. They felt it was the kindest thing to do. They named the twins Zara and Matilda.
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.”
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’s important for Alice and Adam, who are now parents to baby Nelle, to keep the girls’ legacy alive, which includes sharing their story.
She 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.”
