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Victoria and Darren Burgess were devastated when an ultrasound confirmed their 16-week old twins had Twin-to-Twin Transfusion Syndrome (TTTS) – the same condition singer Jesy Nelson is battling
A mum who was given the option to terminate her pregnancy after being diagnosed with a life-threatening condition – one that Little Mix’s Jesy Nelson is also battling – is celebrating one year with her healthy twin boys.
Victoria, 35, and her partner Darren, 33, were overjoyed to be expecting when they attended their 12-week scan, but they were in for a shock. Darren had jokingly suggested they might be having twins, but Victoria was convinced otherwise.
“It wasn’t in my mind that it could be twins, not at all. I just thought I knew my own body,” Victoria said. “We don’t have any twins in our families, so I didn’t even think it would be an option.”
But sure enough, as the sonographer examined the screen, she announced the unexpected news: they were expecting two babies.
“I saw the sonographer look quite quickly over the whole area. I thought I saw a second embryo,” Darren recalled. “The measurements were all done for one baby, and then the sonographer said, ‘here’s baby number two’. Victoria’s jaw hit the floor.”
However, their joy quickly turned to worry when a 16-week scan revealed something alarming – one twin had no visible kidneys or bladder, and the other had excessive fluid in their sac. Doctors diagnosed the pregnancy with Twin-to-Twin Transfusion Syndrome (TTTS), a rare but life-threatening condition that affects around 10 to 15 percent of identical twins who share a placenta.
The couple, from Bristol, were given three options: undergo specialist laser surgery, do nothing and risk complications, or terminate the pregnancy. “Having a termination was never in our heads,” Darren said.
Victoria turned to the Twins Trust website for support and information, finding solace in reading the experiences of other families who had faced TTTS. “At that point, I hadn’t heard of TTTS,” she admitted. “That’s when the Twins Trust website was really helpful – I felt very lonely and confused, and reading about other people’s experiences helped.”
A week after the diagnosis, Victoria underwent laser surgery to save her babies. “We knew it could rapidly escalate, and they were worried about one of the twins,” she said. “The other twin’s sac was getting bigger and bigger.”
The procedure was a success, but Victoria endured weeks of complications, including fluid loss and multiple hospital visits. At 33 weeks, further bleeding signalled that the twins were on their way.
Born via C-section in September 2023, Ezra and Arlo entered the world at 34 weeks and one day, in a theatre packed with 26 medical staff. In a dramatic twist, a student trainee fainted during the birth.
Despite spending weeks in NICU and intensive care, the twins fought through their early challenges, including surgery for hernias, and are now thriving. Victoria, who praised the staff at Musgrove Hospital in Taunton, said she’s determined not to let the challenges of having twins hold her back.
“I enjoy taking the boys to clubs and don’t let the fact I have twins stop me from doing anything,” she said. “Looking back on the TTTS, I think it’s important to have honest conversations. I had never heard of the syndrome before, so I tried to educate myself. I was never pushed into any decisions—the hospital staff were very open-minded and gave us time.”
Darren advised other parents facing similar diagnoses to always ask questions and hold on to hope. “We just kept on hoping,” he said. “We hung onto that hope and had positive outcomes.”
The couple, who also completed the Twins Trust antenatal course to help prepare for their journey, are now focused on raising awareness of TTTS to help other families.
“We just want to say thank you to Twins Trust for being there for us when we really needed the support,” Victoria said. “It was quite a lonely and worrying time.”
For support and more information, visit www.twinstrust.org