When Tom’s twin son Elias died, Tom and his partner Millie decided to share their story to raise awareness of Twin-to-Twin Transfusion Syndrome (TTTS) and to help other families feel less alone. TTTS is a rare but life-threatening condition that can affect identical twins who share a placenta, and it was the reason they lost Elias during pregnancy.
An early scan at six weeks suggested there was one baby. Tom said: “We did ask at the scan if there was just one baby as we both have twins on both sides of our families. But the scan showed just one baby.
“At the 12-week scan, we expected a routine scan but then the sonographer said ‘you know there’s two babies’. It was a real mixed bag of emotions. I think Millie was scared but I was absolutely blown away, I was ecstatic. It took us a while to process it but later we were both buzzing. I don’t think either of us understood the implications of having a twin pregnancy.”
They shared their news with family and friends, and at their gender reveal announced they were expecting twin boys. Their six-year-old daughter, Maia, was excited to become a big sister. With weekly scans continuing, they began preparing for the boys’ arrival and were told what signs to watch for as the pregnancy progressed.
Holding grief and hope at the same time
At around 22 weeks, their TTTS journey began at Liverpool Women’s Hospital. Tom said: “It was around week 22 when our journey with TTTS began at Liverpool Women’s Hospital. We were diagnosed with TTTS and Dr Asma Khalil carried out our laser surgery. She told us there were options but advised it was best to go ahead with the laser surgery.
“We were scared and you do the obvious research online, which probably isn’t the best thing to do. We had never even heard of it before. A week after the surgery we went back to the hospital and they told us there was no heartbeat for the smaller twin, which was twin 2. It was a really tough time as we were under the impression that without the surgery we could have lost both babies. You still want to be happy as you still have one baby, but you have the heartbreak of losing one baby too.”
As they tried to take in what had happened, Tom and Millie focused on getting through each day and protecting their remaining twin. Tom explained how they leaned on one another. “We took some time off work and tried to get our heads around it all. It was very bittersweet. We grieved and allowed ourselves to be upset. We needed to get the emotions out, it was important. But we also knew we needed to stay positive for our other baby and for each other,” he added.
Tom also credits the care they received as something that carried them through the hardest moments. He added: “The care was absolutely unbelievable, it made us feel really comfortable. Professor Khalil helped us so much. Following the laser surgery we had to go for an MRI on baby Enzo’s brain to make sure he hadn’t had any brain damage. It was just before Christmas when we had the scan. We got told it could be a couple of weeks for the result. Professor Khalil sent us a WhatsApp message on Christmas Eve to say the results were good and Enzo’s brain was ok. That was a personal touch that meant we could enjoy Christmas.”
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.
Compassionate care and making memories
Twins Enzo and Elias were born at 34 weeks on 29 January 2025. Elias was born sleeping. Tom said: “It was a real rollercoaster journey. I was just waiting for that first cry. Enzo was rushed to NICU as he needed help with his breathing. I knew I needed to see Elias and spend time with him. The midwife dressed Elias and placed him in a cold cot in our room and we spent about eight hours with him. We did handprints and footprints.
“It was nice to have that time and make memories. I can understand why some people wouldn’t want that but in the same instance, you can never get that time back. I will never ever forget as hard as it was, it was beautiful as it could have been.
“The bereavement midwife, Nicola, who looked after us at The Royal Oldham Hospital was amazing. She made it so much easier for us than it could have been. She explained what was happening and that was helpful as we didn’t know what to expect. The midwife dressed Elias and she had this really small teddy bear, which she put in between his hands and he was hugging it.
“The last image I have before the funeral director took Elias away was him in his little hat and outfit that the bereavement midwife got for us. He was hugging the little teddy bear. I’ve always got that in my head now. We will never forget that - it was a beautiful memory to have on such a difficult day.”
Turning love into awareness and support for others
During hospital visits and the night before the birth, Tom began writing a song to remember Elias. The song, Lullaby In The Sky, was played at Elias’ funeral, and the artwork promoting the single features the twins with Elias holding the teddy bear.
“It’s a shame we’ve had to go through such a journey for us to even write this song. We’re all now settled at home and Enzo is doing amazing, we’re besotted with the little man, who has been through so much himself already.
The fact that we have come through it gives me something inside to want to share that with people. I want to help people who’ve had to struggle in silence as well as helping to raise awareness of TTTS
“I was going to keep it as a song for us but a small circle of friends and family told me I needed to get it out there. I wanted to raise money for Twins Trust with the song so we can help other people who may be struggling.
“We had so much support from our family and friends. I wanted to support a charity that helps families with TTTS but specifically with multiple pregnancies and Twins Trust was who I wanted to work with.”
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