3 October 2024

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).

As parents across the world mark Baby Loss Awareness Week (BLAW), Daniela has shared the family’s story. She found comfort in the Twins Trust Bereavement Service community when Daisy died.

The couple spent 18 months trying for a baby. Their happy news of realising they were pregnant quickly turned to sadness when they miscarried in August 2021.

Just months later on holiday to the Maldives in November 2021, Dave surprised Daniela by proposing and a couple of days later, Daniela was delighted when she had a positive pregnancy test.

She 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.”

Scans later revealed that Daniela did have TTTS at 22 weeks. TTTS is a rare but life-threatening condition that affects 10 to 15% of identical twins that share a placenta (monochorionic twins). TTTS can also occur in triplet or higher order pregnancies with monochorionic twins. Specialist laser surgery carried out on the babies in the womb is offered to help save the babies’ lives.

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 and both babies survived the operation. But just hours later, Daniela started experiencing painful muscle spasms and doctors were worried she had gone into labour or was bleeding internally. They feared amniotic fluid had leaked into her body and caused the attacks.

Heartbreakingly, at 22-and-a-half weeks, doctors said there was only one heartbeat and one of the twins, who the couple named Daisy, had passed away.

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.

The heartbreak and the pain was horrendous

“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.”

At 34 weeks, Daniela had an emergency C-section and baby 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.

“We had photos taken with Daisy and she stayed in my room for a couple of days in a special cold cot. We had a naming ceremony and they let us push Daisy in the pram to the mortuary.”

Daniela said despite support from bereavement counsellors, it’s still very hard to come to terms with the grief of losing a baby.

It’s so important to recognise any loss

“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.”

When Daniela found out about Twins Trust Bereavement Service, she was able to find a community of people who understood what had happened to her.

“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.

Daniela and Dave, plus their gym members at FBC Harrogate, have ploughed their time into helping others and fundraising for Twins Trust, to support other bereaved families. From fundraising runs to family events and mountain climbs, they have raised more than £6,000 for the charity. Daniela is currently training for the London Landmarks Half Marathon in April 2025.

They will mark Baby Loss Awareness Week by joining in the Wave of Light, by lighting a candle in Daisy’s memory.

She added: “BLAW gives us a chance to remember all the babies. It’s so important to recognise any loss."