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Scar is constant reminder of the twin sister Elly never met

7th December 2017 

A survivor twin will forever remember her sister by the scar their joint illness left on her heart.

Abby and Elly Read were identical twins who suffered from TTTS (twin to twin transfusion syndrome) when they were still inside the womb. The condition can affect identical twins who share a placenta and can claim one or both babies’ lives.

After Abby sadly passed away part-way through the pregnancy, Elly was injected with blood to keep her alive – a procedure which has left a physical scar, and a constant reminder of her twin sister, on her chest.

Their mum Eve has decided to share the family’s incredible story to raise awareness of Tamba’s TTTS Registry – a research project to improve outcomes for TTTS babies – as part of TTTS Awareness Day, which is held every year on 7th December. Tamba set up the TTTS Registry  in 2015 to collect data on twins with the condition throughout the UK.

“The scar is a constant reminder for her that she has a sister and her life was saved by an amazing medical team,” said Eve. “Elly wouldn’t have survived without that injection and the scar on her chest will always be special to us.”

Eve and her husband Andy, both now 40, unexpectedly found out they were pregnant with twins just before Christmas – almost exactly eight years to the day on TTTS Awareness Day.

Eve, who lives in Essex and works in financial services, said: “We were quite surprised, but obviously embraced the news. We went for our first scan at Southend Hospital in January 2010 and found out it was identical twins. We were over the moon and felt really blessed.

“The midwife then pulled us aside and said, because we were having identical twins and they shared a placenta, she had to tell us about a condition called TTTS. It did take the wind out of our sails – we’d been so happy when we were told it was twins, then the talk of it being life-threatening and the risks involved really brought us down.”

TTTS occurs when there is an imbalance of blood supply from the placenta to the twin babies. One baby receives less blood (the donor) and often becomes smaller and anaemic. They can also suffer from a reduced amount of amniotic fluid and become stuck to the side of the womb. The twin who receives more blood (the recipient) becomes bigger and the higher blood volume puts a strain on their heart. You can read more about other families and their experiences of the condition here.  

At 16 weeks into the pregnancy, the couple were referred to Kings College Hospital London – a specialist centre for multiple births and one of the member hospitals of Tamba’s TTTS Registry. They were asked to return in two weeks and at their second appointment they were told there was some size differences in the twin babies – which can be an early sign of TTTS. A week later they returned again and were dealt some devastating news.

“I woke up on the morning of the appointment and my stomach had changed shape,” said Eve. “It was still round, but it definitely looked different to before.

“We had the earliest appointment anyway, so I headed into London. A consultant started the scan and then quickly went to get a colleague of his and she told us the bad news. She said ‘I’m sorry but one of your baby’s hearts has stopped beating’. It was just awful. Even now it still upsets me to think about it.”

The couple, who later named their deceased donor twin Abby, had more bad news to come. The medical team said they were also concerned for the other baby, later named Elly after one of the consultants, and said her outcome wasn’t looking very positive.

Eve explained: “When Abby died it created a kind of vacuum and they suspected Elly’s blood oxygen levels were really low. They suggested giving her a small amount of my blood – a very small blood transfusion of just 5 ml – to keep her alive. They were operating on her heart while she was still in my womb, so it was a very risky procedure. But we just thought ‘why wouldn’t we try to keep her alive?’ and said yes.”

Some blood was taken from Eve and left to settle so that only red blood cells were injected. An hour later, when  the needle was inserted through Eve’s stomach into one of Elly’s heart chambers. She and husband Andy, a landscape gardener, watched, with a huge medical team, this miraculous surgery on the screen.

“It was incredible seeing them and that’s how I will always remember Abby,” said Eve. “I know they’re identical but I don’t look at Elly and imagine another girl her age – I’ll always picture her as that little baby.”

At the same time as the blood transfusion, doctors took some of Elly’s own blood and found the oxygen levels to be dangerously low. The team made it very clear to the Reads that the prognosis was not good.

“There was a really strong indication we’d still lose Elly,” said Eve. “After the operation they told us to go and do something nice and try and take our minds off things so we did a few little things over that weekend, including buying her a cuddly toy. On the Monday we went back to Southend and there was still a heartbeat – it was such a relief. But on Tuesday we went to Kings and they explained there was still a chance she could be severely brain damaged, but they wouldn’t know for sure until much further into the pregnancy.”

The couple returned for fortnightly check-ups and scans and at 32 weeks, when Elly had grown much bigger, an MRI scan was performed. Two days later she was given the all clear for brain damage. But even though there appeared to be no major damage, there could still be other problems ahead.

Eve said: “After we lost Abby I was told I didn’t have to proceed with the rest of the pregnancy if I didn’t want to. But the thought of losing both babies was just horrendous to me – Elly had fought to stay alive, albeit with some help, so why should we deny her that chance?

“I had hoped to carry Elly to 37 or 38 weeks and the consultants wanted me to have an induction, but I felt she’d been through enough trauma and asked for a natural delivery. It turned out she had her own plans anyway, as my waters broke at 35 weeks.”

At 5.17am a 4lb 15oz little baby girl was born at Southend Hospital. She was perfectly healthy and, for the condition she was in, might as well have been a full-term, thriving baby.

Eve said: “I had to go into theatre to have my placenta and Abby removed. They asked me if I wanted to see her and prepared us that she didn’t really look like a baby, as we’d lost her quite early on in the pregnancy. We still wanted to see her and they were incredibly nice and respectful about it – they laid her in a little cot with a blanket. All the staff were incredibly empathetic about our situation but one nurse in particular still stands out.

“The joy of Elly arriving was amazing, but we were obviously devastated about Abby. But I think because we lost her earlier in the pregnancy, we’d already had some time to grieve and were able to enjoy their birth day.”

Eve is now a supporter of other parents who have experienced TTTS, offering them comfort and answering questions from a parent point of view on a private Facebook group. Since the girls’ birth, they’ve also had a son, Joshua, who is now 3.

She said: “Elly does ask about Abby sometimes and as a family we find it difficult when we see identical twin girls.  She sometimes says she misses Abby or she wishes she was here – we told her she is in heaven. We’re not actually religious but we want her to be able to visualise her somewhere nice.

“It does help knowing I’m able to help other people too and support them when they have been told their babies have, or may have, TTTS.”

On TTTS Awareness Day, 7th December, parents are offered the chance to remember lost babies.   It is also an opportunity to raise awareness of the condition.

Tamba CEO Keith Reed said: “What happened to Eve and Andy is incredibly upsetting but sadly, we’re all too often reminded that theirs isn’t an isolated case. In the next year, hundreds of families will be told their twins have TTTS – the pain of hearing those words is just unimaginable.

“That’s why we set up the TTTS Registry – to look further into this harrowing condition in the hopes that outcomes can improve in future.”

You can download our TTTS Guide for Parents here. If you’ve been affected by a bereavement, we have a support booklet for parents which can be downloaded here.  

 

Related blogs: Tracey's Story, Mum's TTTS Story, TTTS Lights, TTTS Video, Lynsey's Story

 





 

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