Not alone after loss: finding comfort in an online community

When Daniela watched the two lines appear on a pregnancy test during a dream holiday in the Maldives, she couldn’t have been happier.

After the initial shock of discovering they were expecting multiples, Daniela and fiancé Dave couldn’t wait for their twin daughters to arrive. Tragically, they never got to meet one of their daughters, Daisy, after she died due to a condition called Twin-to-Twin Transfusion Syndrome (TTTS).

Daniela has shared the family’s story and how the Twins Trust Bereavement Service community helped her feel less alone.

Daniela miscarried in August 2021 and the heartbreak was overwhelming. So when Dave proposed in November 2021 and, just days later, Daniela found out she was pregnant again, hope returned quickly.

At their private scan, the news came as a shock and a thrill. Daniela said: “We had a private scan at eight-and-a-half weeks. They said there were definitely two babies. Dave was gobsmacked. We found out they were identical at 12 weeks. And later we found out they were twin girls - we were over the moon. On one scan they said the twins were growing well but they did say there was a bit more fluid around one baby, compared to the other. At the time they wrote on my notes TTTS with a question mark but nothing more was said.”

As the weeks passed, that early question mark became a diagnosis. At 22 weeks, Daniela was told she had Twin-to-Twin Transfusion Syndrome (TTTS), a rare but life-threatening condition that can affect identical twins who share a placenta. It changed everything in a matter of moments.

Making hard decisions

Daniela and Dave were suddenly thrown into urgent decisions and rapid planning. Daniela added: “It was awful that day, that was probably when we were grieving the most. We just couldn’t believe it was all fine and then such a sudden change. Dave fell to pieces in the car park. They said we needed the specialist laser surgery straightaway and we had to travel to Birmingham for this. I remember just clinging onto the wall. I couldn’t process anything. We wanted to go ahead with the surgery so we could give the babies the best chance of survival.”

The surgery went ahead. But only hours later Daniela developed painful muscle spasms, and doctors were concerned she may have gone into labour or was bleeding internally. They feared amniotic fluid had leaked into her body and triggered the attacks.

Then came the news they had feared. At 22-and-a-half weeks, one of their daughters, who they named Daisy, had died.

Daniela said: “I just burst into tears. I knew we had to carry on, I said to Dave, ‘let’s not collapse now’, we knew we couldn’t do that.

“Our surgeon said to us: ‘You have lost a baby so you need to grieve for this baby but right now you need to stay strong for the surviving one to get through. So you must grieve later.’ Those words just stayed with me. The heartbreak and the pain was horrendous.

“I felt great comfort knowing I was still carrying them both and they were safe with me and still together. But as time was moving on closer to birthing them, it hurt so much knowing she was going to be gone forever.”

Mixed emotions

At 34 weeks, Daniela had an emergency C-section. Daisy was born sleeping alongside her sister, Orla, on 11 July 2022. Daniela had to be transferred to a hospital in Grimsby for the birth.

She said: “Orla came out crying and as soon as we heard that cry, our shoulders dropped. The pregnancy was such a worry and to know she was alright was just amazing. She did have a stay in NICU. This was because she was born prematurely and needed light therapy and help with establishing feeding.

Even with support from bereavement counsellors, Daniela found the grief didn’t move in a straight line.

“It’s not been until now, two years later, that I have processed it all. Because you have a newborn. You’ve got this beautiful baby but you’re grieving for another one. That balance is so hard to navigate. Obviously it gets easier but then it also hits you like a tonne of bricks.

“There’s a huge grief when Orla is looking in the mirror as I see them both and always think what should have been. Or when she is playing with a friend, we get such mixed emotions, we love seeing her happy but the pain comes as we know she should be playing with her sister.”

You don’t have to do this alone

In the midst of those conflicting emotions, Daniela found comfort in connecting with people who truly understood. When she discovered the Twins Trust Bereavement Service, she stepped into a community where her experience didn’t need explaining.

“I joined the Twins Trust Bereavement Service social channels and found others who had been through a similar situation. You know they’re on the same page and understand you. Just reading other people’s comments on the pages made me feel less alone,” she said.

Over time, Daniela and Dave also channelled their love for Daisy into helping others, fundraising alongside their gym members at FBC Harrogate. Through runs, family events and mountain climbs, they have raised more than £7,000 for Twins Trust, in the hope that other bereaved families will feel supported, seen and less alone.