Deborah Johnston, of Glasgow, was six months pregnant with identical twins, Theo and Olly, when she was diagnosed with life-threatening transfusion syndrome (TTTS).
The twins survived thanks to urgent laser surgery and constant monitoring and care from doctors and staff at Wishaw General Hospital and Queen Elizabeth University Hospital in Glasgow.
Deborah, 42, spoke to thank the doctors who acted at the height of the pandemic and to mark World TTTS Awareness Day on Tuesday.
The mum, who also received support from the national Twins Trust charity, said: âMy partner Scott and I were over the moon when we were told we were having twins – we had always wanted twins.
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âWe will be eternally grateful for the care we received and to everyone who assisted us on our journey.
“Theo and Olly are the happiest babies I have ever seen. I hope they can give hope to other families.”
TTS is a rare disease that only affects identical twins who share a placenta, and occurs randomly when there is an imbalance in the blood flow between the twins.
A twin, the donor, loses more blood than he receives and is at risk of malnutrition and organ failure while the recipient twin receives too much blood and may suffer from heart and other complications.
Deborah, who also has four-year-old daughter Rosie, had never heard of TTTS until she became pregnant with identical twins and was told she was at high risk. But just over 26 weeks pregnant, she was faced with a heartbreaking choice to save the lives of her babies even before they were born.
If she didn’t do anything, she would likely lose both twins, while draining the fluid might have only helped one sibling. Meanwhile, undergoing surgery, known as endoscopic laser ablation, would give the two babies about a one in three chance of survival. Since she was more than 26 weeks pregnant, the surgery would be complicated by the thickness of the blood vessels.
Deborah felt that surgery was the only option, but feared that history would repeat itself. Remarkably, both of her parents had lost a twin brother at birth.
She said: âWe were told about the condition on the first appointment with the consultant, but you hope and pray that doesn’t happen to you.
“Then, during one of my scans, it became clear that there was a lot of fluid around one twin and not as much around the other.”
Deborah was scanned twice a week, but woke up one morning in such discomfort that she could barely move.
A CT scan at Wishaw General Hospital showed an abnormal reduction in amniotic fluid around a twin caused by loss of blood volume in his brother.
She was immediately referred to Queen Elizabeth Hospital where a specialist informed her that the two twins were very ill and offered her three options.
Deborah said: “I was devastated but laser surgery seemed the only option because it gave us hope. I was shocked that there was only a 33% chance that our two boys would be successful. because they were so bad, but we clung to that hope.
âMy mom and dad were twins and they both lost their twin at birth, and I had in mind that it could happen again. The next day we heard two heartbeats and the relief was incredible. “
The following days were critical but the condition did not return. Deborah gave birth to twins Theo (4lb 6) and Olly (4lb 7) via a Caesarean section scheduled for November 24, 2020.
The brothers spent four days in newborn care and then in special care for another ten days before being allowed to return home in time for Christmas. They recently celebrated their first anniversary.
Deborah said: “They were tiny, but they were perfect. Bringing them home in time for Christmas was the best gift ever. I am so grateful for the care we received, especially during the pandemic.”
Helen Peck, Scottish Coordinator of Twins Trust, the only UK-wide charity dedicated to improving the lives and well-being of families with twins, triplets and more, said: âThe World TTTS Day helps raise awareness of this serious, but often treatable disease.
âAnyone expecting twins or multiples should know the signs of TTS and feel empowered to talk to their health care provider if they have any concerns. Twins Trust has resources to help parents understand the condition, spot symptoms, and advocate for the care they need. “