8 August 2019

Twin Dad Peter Etherington says research into TTTS is vital after he nearly lost his boys to the devastating condition.

Twin-to-twin transfusion syndrome (TTTS) is rare, but can affect 10-15% of identical twin pregnancies. That’s why he cycled 100 miles to raise money for Twins Trust in the PruRide London event on August 4th 2019.

Peter and wife Laura from Stamford, Lincolnshire were surprised and thrilled to discover they were expecting twins.

“At the 16-week scan we were told that we would have scans every two weeks, which at the time seemed very reassuring,” said Peter.

But it was during the 18-week scan at their local hospital the couple were told that there was a clear size difference between the babies and the smaller twin was unlikely to survive. They were devastated by this news.

“Unfortunately it seemed the sonographer hadn’t been trained in scanning more complex twin pregnancies and gave us every impression the loss of one twin was imminent,” said Peter. They were left in a side room and told a consultant would be along to see them. 

Thankfully the consultant recognised that this was TTTS and immediately placed the couple under the care of Leicester Fetal Medicine Unit, where Stage 3 TTTS was indeed confirmed.

“After diagnosis, Laura did a lot of research and found the stories on Twins Trust’s website about TTTS a source of reassurance and comfort,” said Peter.

Following the appointment at Leicester they had an urgent referral to Professor Mark Kilby at Birmingham Women’s Hospital, it was there that laser ablation was carried out, this seals shut the blood vessels between the twins. Two litres of excess amniotic fluid was also drained away.

Peter said: “Professor Kilby explained all the risks involved but it was never an option for us not to undergo the procedure, we wanted to give our twins every chance of survival.”

The surgery was successful and the blood flow between the twins was stabilised. Further tests on the twins, however, confirmed that the smaller donor twin had been without blood flow for a short time. The pregnancy continued under close observation and Laura gave birth via planned C-section at 34 weeks to Arthur (3lbs 13oz) and Stanley (2lbs 15oz).

“We were warned that the smaller twin, Stanley, could have had difficulties after delivery but much to everyone’s surprise did better than we could have ever hoped,” said Laura.

“He’s a little fighter and continues to amaze us to this day showing to be a very determined little boy!

“I want people to know that even when outcomes look particularly bleak, great things can happen. A lot of this is down to the brilliant care at Leicester and particularly at Birmingham Women’s Hospital under Profession Kilby who we will forever be indebted to.

“The boys have just celebrated their first birthday.  The year has passed by incredibly quickly, they are both now gaining their own personalities and we are enjoying being incredibly proud parents to two fantastic little twin boys.”

Peter joined Ben Rean, Tom Hughes and Richard Briggs who all cycled for Twins Trust in the ride on 4 August 2019.  We want to say a huge thank you to them for fundraising.