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Hayley's story

When Hayley found out she was expecting at four weeks, she never prepared herself for the possibility of identical twins.

“I found out at my 12 week scan. It was crazy, I laughed and I cried, I was very shocked,” she said.

For twenty weeks her pregnancy went smoothly, with both babies looking healthy at her 15 week scan. But by 17 weeks, things had changed dramatically and she was diagnosed with severe twin to twin transfusion syndrome (TTTS).

“My donor twin, twin B had no visible bladder. She was shrink-wrapped to the side of my womb and she had no fluid around her,” Hayley said.

The hospital staff told her she was suffering from a severe case of TTTS.

“I didn’t even know what it was. They said ‘we need to refer you to a different hospital. I’ll go and do that while you go sit in another room,’” Hayley said.

“So I’m sitting there thinking, what the hell is this TTTS? So I google it to find out and, obviously all these different outcomes come up and I’m just all over the place. I didn’t really know what was going on.”

Hayley was then told she would need to go to a hospital in London, where specialists would explain her options. After a nervous night, the couple headed down to London for their scan. It was at this appointment that Hayley found out she was expecting twin girls and had a chance to see them on the screen.

“They said that twin B was very, very ill and that if I didn’t have the surgery there would be 80-100 percent chance that I would lose both of them. But if I did have the surgery there would be a 33 per cent chance that I would lose them both, 33 percent chance I would keep them both, and 33 percent chance that I would lose one and have one. So obviously we said we’re going to go for the laser surgery,” Hayley said.

“The surgery was done in the evening which went really well. The professor that did it was really really good. He was chatty the whole way through, holding my hand, and talking about other people’s outcomes.”

After surgery Hayley had to wait half an hour for another scan to see if her babies had a heartbeat.

“I was just crying my eyes out, because obviously I couldn’t do anything now. That was it. Then we went back in for the scan and both of them had heartbeats,” Hayley said.

She was told to have another check up with her local hospital at 19 weeks, to see how the babies were going.

“I was really naïve at the time. I was 19 and I was thinking ‘I’m going to have them both. I’ve had the surgery now it’s fine,’” Hayley said.

“But when I got there, I saw straight away that twin b had no heartbeat. She (the sonographer) didn’t even need to say anything.”

The sonographer carried on with the scan, to find out that Twin A had a heartbeat and seemed to be doing well.

Hayley felt numb. “I didn’t cry or anything, I think I just went into shock, nothing went through my mind. But as soon as she said, right you can go, I left straight away and left my partner to take all of my notes. And I went to the toilet and just cried my eyes out for ages,” Hayley said.

“Then we had to tell everybody that we were only going to be having one baby, and that was just horrible.”

Fortunately, as the week’s progressed, twin A continued to do well. But the day after her 36 week scan things took another turn for the worse.

“My waters had broken and I was haemorrhaging big time. I went straight to hospital and they said ‘this is really bad, we need to keep you in. You’ve lost a lot of blood.’  It was very traumatic,” Hayley said.

Luckily the blood loss slowed down and Hayley was able to wait another two days before giving birth naturally.

“Twin A came first, and the whole pregnancy I was like ‘I want to see twin B, I want to get a picture of her.’  Then, as soon as they said ‘it’s time to push,’ I was like ‘I don’t want to see her, I just don’t want to, and I was in tears the whole time.’” Hayley said.

Twin A was born not breathing, but doctors were able to revive her. Twin B was born silently, weighing just 40grams.

As she recovered in hospital Hayley struggled to connect with her surviving twin, Heidi.

“I took her home and that was really hard, because there were two cots. But it was nice because as soon as I got there, that’s when I fell in love with her. And I thought ‘I’m never letting you go’,” Hayley said.

They buried Heidi’s sister three weeks later.

“We buried our angel Alice three weeks after birth.  We picked a white coffin, we picked a blanket for her to be wrapped up in. We picked the songs and the poems.  I held Heidi in my arms whilst watching her twin sister be lowered into the ground, and no-one should have to do that. It was a beautiful service though,” said Hayley

Although it’s been a rough journey, two years on survivor Heidi is doing well and is the apple of her mother’s eye.

“She’s absolutely perfect… she’s my world,” Hayley said.

Hayley said it was vital that there was better awareness and more support for people going through TTTS.

“Awareness needs to be out there to everyone including doctors and midwife’s. Ladies that first find out they are having identicals need to be told about TTTS and the risks,” she said.


About TTTS

TTTS is a rare condition which occurs in about 10-15% of identical twins who share a placenta (monochorionic twins). It can appear at any time during pregnancy, but most commonly before 24 weeks gestation. For more information about TTTS visit our TTTS information page.

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