9th December 2018

A Surrey couple has warned parents of identical twins not to be afraid to challenge the care being given if they suspect the life-threatening condition TTTS (Twin-to-Twin Transfusion Syndrome).

Duncan and Angelina Moffett are sharing their story on World TTTS Awareness Day (Friday, December 7th).

“Don't be afraid to speak up about the care, especially if it falls below the standards set out by NICE and Twins Trust, and don't feel afraid to seek support from other parents who have been through TTTS,” said Duncan.

We feel very lucky to have received the care that we did but know so many parents going through TTTS in the UK don’t and it appears to be a postcode lottery.

Angelina was diagnosed with stage 1 TTTS at 20 weeks where she found out she was carrying boys. She was monitored, but by 22 weeks the TTTS had progressed and laser surgery was required.

Between the two scans, the couple enjoyed some normality but driving one day Angelina felt something was wrong with her bump.

She said: “It felt swollen and hard but also uneven making me almost hunch over which looking back was obviously the result of one of the twins having too much fluid around him.

“My advice to all expectant twin mums is to keep an eye on your bump and get these things checked. We were lucky we had a scan the next morning, if we didn’t it could have been a very different outcome.”

The scan revealed one twin had no visible bladder and was stuck due to having no fluid around him and the other had an enlarged heart due to the strain of the additional fluid.

The couple were told that without immediate laser surgery they would lose both boys and that even after the surgery there was still a chance of losing one or both of them or that the procedure could trigger preterm labour.

I was absolutely devastated and terrified. I felt a failure as a mother because my body wasn’t protecting them as it should

 said Angelina.

“We’d read all the statistics about survival rates and felt so scared and nervous for the future of our unborn children.

“But then reading all the information on the Twins Trust website really helped us and helped me stay away from the general internet too much.”

The surgery was carried out by Dr Asma Khalil at St Georges hospital in London and was a success, but the couple were repeatedly warned that the twin left with a small placenta share may not make it and they lived in constant fear at each follow-up scan.

However, they were able to celebrate reaching 28 weeks as they knew one of the twins was now over 1lb and the chance of survival was increasing day by day.

But just five days later Alexander and Harris arrived into the world via emergency C-section as Angelina suffered a placenta abruption and lost more than a litre of blood.

The boys were in hospital for 65 days and came out at what would have been 38 weeks gestation.

Duncan said: “We had many ups and downs during our stay including Alex getting very poorly with e-coli and needing ROP surgery. As well as many transfusions and Alex on and off oxygen. 

“Our care was split between St Peter’s in Chertsey, which we were lucky is the highest level neonatal intensive care unit in Surrey and St George’s in London where the surgery took place.

“The best thing St Peter's did was to know where their knowledge finished and when it was right for us to be referred to the specialists at St Georges.

“This was NHS care at its best as consultants at both hospitals were amazing at treating the boys and at ensuring we were both ok and took the time to answer the many questions we both had.

“But we know this isn’t always the case which is why Twins Trust’s research and QI programmes are so important.”

Twis Trust’s TTTS Registry was set up in 2015 to help specialists learn more about the condition. Patient data is entered into the registry and shared with hospitals registered on the system. This data is used as a learning tool and will hopefully improve outcomes for TTTS twins in future.

However, Twins Trust’s TTTS Registry needs funds in order for this vital research to continue. Please support the cause at https://www.justgiving.com/fundraising/tttsappeal