Belfast Telegraph

UK Website Of The Year

Mcllwaine twins at home after op that saved their lives

By Sophie Inge

Published 19/10/2016

Fiona and Stephen McIlwaine hold their baby twins Robyn and Freya yesterday
Fiona and Stephen McIlwaine hold their baby twins Robyn and Freya yesterday
The twins together
Proud dad Stephen cradles them in hospital
Fiona holds babies for the first time at five-weeks-old

When Fiona Mcllwaine's son Finn was stillborn at 41 weeks last year, she and her husband Stephen were devastated. But they were determined not to give up hope of becoming parents.

So, when the Lisburn couple found out they were having twins in January, they were absolutely delighted.

But their joy soon turned to dread, when they were told by a consultant at the Royal Jubilee Maternity Hospital in Belfast, that the twins - Robyn and Freya - had a life-threatening condition.

The condition, TTTS (twin-to-twin transfusion syndrome), occurs in twins that share a single placenta, where blood passes from one twin, known as the donor, to the other - the recipient.

It means that the recipient twin can end up with very little amniotic fluid, while the larger twin can have an excessive amount.

Even with treatment, there was only a 70% chance of both Fiona and Stephen's babies surviving. Even if they did, there was a chance that the babies would suffer from a disability or health condition.

The couple, who had never heard of TTTS, were in shock.

"We just couldn't believe it," said accountant Fiona, who is 31.

"We knew getting pregnant again would be really difficult because of our experience with Finn.

"We thought: 'We'll go private. We'll do everything that we didn't do last time.' Not that we did anything wrong, but you keep wondering what we could have done differently."

Their consultant, Dr Samina Dornan, step-mum of Hollywood actor Jamie, had dealt with TTTS cases before and was able to advise the couple.

"She wasn't giving us false hope - she was giving us the facts," said Fiona.

"But she did it in a way that really reassured us, so we were confident in her and what was happening."

On Dr Dornan's recommendation, the couple travelled to St George's Hospital in London, where Fiona underwent laser surgery to separate the placenta between the two babies. By coincidence, the surgery was on April 12, exactly one year after Fiona had delivered Finn. "I thought we would be going up to Finn's grave and dealing with our grief - but we ended up going to London for surgery."

Fiona was awake during the surgery, which she could see on a screen. It was then that she found out she was going to have girls.

The surgery was a success and the couple returned to Belfast a few days later. But their ordeal wasn't over. Four weeks after the surgery, the sack of the recipient twin ruptured, and Fiona was rushed to hospital.

Dr Dornan was away and the on-duty doctor had not even heard of TTTS. A few days later, Dr Dornan returned, and the sack eventually sealed again.

On June 13, at just 27 weeks, the girls were born via emergency c-section. "They came out crying, and I think that was what really made it for me and my husband," said Fiona.

"I had to have a natural delivery with Finn, so I was pushing him out knowing I wasn't going to be able to hear him cry. So to hear two girls crying was everything." Robyn, the donor twin, weighed just 1Ib 9oz, while Freya weighed 2Ib 3.5oz. Freya's middle name is Samina, after the doctor that saved her life.

For Fiona, the next few weeks were a "rollercoaster", with both girls needing to be closely monitored. They ended up having seven blood transfusions between them.

It was 10 days after the birth before Fiona was finally able to hold Freya, then Robyn a few days later.

"It was amazing, but very scary because they were so small and there were so many tubes."

Finally, at 12 weeks, the couple were able to bring Robyn home. Freya was discharged a week later.

Fiona is happy with the way her pregnancy was dealt with at the Royal Jubilee Maternity Hospital, but she doesn't think her case would have been handled so well if Dr Dornan hadn't been there.

"I think we were very lucky that Dr Dornan was our consultant," said Fiona. "If we had seen another consultant or midwife, they might have not picked up on the TTTS as early on."

Soon, however, a new scheme will be helping couples like Fiona and Stephen. This November, the Royal Jubilee Maternity Hospital will become the first in Northern Ireland to support the TTTS Registry - a scheme aimed at saving the lives of unborn twins.

Set up by the Twins and Multiple Births Association (Tamba), in partnership with nine fetal medicine centres in the UK, the registry will help doctors better understand multiple pregnancies and their potential complications.

"We will, hopefully by November 1, be entering data in the TTTS Registry and sharing information and ideas with other consultants across the UK," said Dr Dornan.

"We hope to improve survival rates and ensure we're offering the best possible care for families."

It is now hoped that other consultants in Northern Ireland maternity units will get involved in the TTTS Registry.

Back at home in Lisburn, the four-month-old twin sisters are thriving. "They're both wee smilers with big bright eyes. Everything about them is perfect," said Fiona.

Belfast Telegraph

Read More

From Belfast Telegraph