5 October 2022

As she lights a candle and a flame flickers in the darkness during Baby Loss Awareness Week (2022), twin mum Katie Harris will remember Abikara, her daughter who died in January 2021.

At a time of great celebration and darkness, Katie turned to Twins Trust Bereavement Service, where she discovered an extended family to support her through incredibly tough times.

Katie, 38, said: "For me, Baby Loss Awareness Week is the one week of the year where you can talk about baby loss and people are receptive to it. We light a candle in front of a frame with Abikara’s date of birth, her weight and date of gestation on it.

"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."

Now Katie is telling her story to help other families who face a journey through bereavement and parenthood. The Bournemouth mum discovered she was pregnant with twins in September 2020. After enduring bad bouts of morning sickness and bleeding, an early scan revealed she was having twins.

Doctors said at this stage the babies were non-identical and told Katie that this was the safest type of twin pregnancy to have. After her 12-week scan, she continued to be monitored and doctors still believed at this stage the twins weren't identical. Katie was scanned every four weeks, as the twins were non-identical,  compared to fortnightly if the twins been identical. When Katie had her 20-week scan, sonographers were unsure about the non-identical diagnosis.

Katie, who lives in Boscombe, 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. At the time doctors feared the twins might have Twin-to-Twin Transfusion Syndrome (TTTS). TTTS is a rare but life-threatening condition that affects 10% to 15% of identical twins that share a placenta (monochorionic twins).

It was then discovered the twins weren't non-identical. She 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."

Katie’s pregnancy continued and doctors were less concerned until she was back at hospital with reduced movements. At 24 weeks and four days, the family were told the tragic news that 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."

Katie gave birth at Poole Hospital in Dorset on 13 April 2021. Abikara was stillborn and her twin sister was named Karael. 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."

Today, Katie said she still finds it hard when people ask how many children she has. She 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."