As she lights a candle and watches the flame flicker in the darkness, twin mum Katie remembers Abikara, her daughter who died in January 2021.
Katie, 38, discovered she was pregnant with twins in September 2020. After severe morning sickness and bleeding, an early scan confirmed there were two babies. At first, doctors believed the twins were non-identical and told Katie this was the safest type of twin pregnancy. Because of that, she was scanned every four weeks, rather than fortnightly monitoring often used for identical twins.
By the 20-week scan, sonographers were no longer confident about the diagnosis. Katie said: "The sonographer didn't think it had been diagnosed as the right kind of pregnancy. She felt it was identical twins. They asked for a fetal medicine doctor to review my scan. They had concerns about blood flow and the growth of twin two."
Katie was referred to St George’s Hospital in London, where doctors initially feared Twin-to-Twin Transfusion Syndrome (TTTS), a rare but life-threatening condition affecting 10% to 15% of identical twins who share a placenta. Further checks confirmed the twins were identical, with umbilical cord insertions very close together. Katie said: "Doctors at St George's Hospital confirmed they were identical twins. They explained that the insertions of umbilical cords were really close together.
"They thought the egg had split really late. They said if it had been a day or so later, they would have been conjoined twins. They said the twins didn't have TTTS and we were booked in for weekly reviews at St George's. Both twins were at risk because of the blood flow being restricted because of the close cord insertions."
When something feels wrong, trust your instincts and seek help
As the pregnancy progressed, doctors became less concerned. Then Katie returned to hospital with reduced movements. At 24 weeks and four days, her family received devastating news: Abikara, twin one, had died.
Katie said: "When the doctor told me that Abikara had died, it felt as though time had stopped. I will never forget that surreal moment where my biggest fear was confirmed. I had been worried about her reduced movements but I had convinced myself that everything would be ok. Knowing my baby's heart had stopped and not knowing what that would mean for my survivor was terrifying and heartbreaking. I lay awake all night in the hospital trying to process what I had been told and what might happen next.
"My survivor twin was the baby they were initially worried about. I had weekly scans after this and was monitored and had lots of contact with the hospital. I carried both twins until 36 weeks and two days."
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.
Grief alongside parenting needs space and understanding
Katie gave birth at Poole Hospital in Dorset on 13 April 2021. Abikara was stillborn and her twin sister was named Karael. As Katie began life with a newborn while grieving, she found many people didn’t know how to hold both realities at once.
Katie added: "I had a surviving baby and a stillborn. The thing that's very different when you do have a twin loss, especially with a surviving twin, is that people's attitudes are almost like 'well you've still got one.'
A lot of people said to me that I had to stay positive for the other baby. Somebody said it was very sad about the one baby but they imagined it would have been very hard with two babies. Baby loss is a taboo subject and people don't know what to do with it.
"It has definitely opened my eyes to how difficult people do find it and they try to find something positive in it. They don't know what to say so they find something to say."
Even now, everyday questions can bring the loss sharply back into view. Katie said: "It just feels like I have two children and nobody talks about Abikara. I find that really difficult.
"Going through life day-to-day, it makes certain questions really tough. If you meet people for the first time and they ask how many children you have. It's a dilemma and I've got to explain and that's really awkward. But then if I don't it's like an internal battle with yourself, like you are denying your baby or making it uncomfortable for other people."
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.
Finding a place where you can speak their name
In the midst of both celebration and darkness, Katie turned to Twins Trust Bereavement Service and found what she describes as an extended family. She said: "Twins Trust felt like a lifeline to me. To finally be able to connect with other people who truly understood and felt my pain, and the complexity of having a loss and a survivor helped me feel less alone. Having somewhere safe to vent and share my feelings on a hard day would make that day feel more manageable.
"Being able to connect with other parents via the virtual meetings was lovely. Although sad, it felt great to be able to talk about Abikara so openly in a safe place with other people who just got it."
