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Danielle's Story

Danielle shares her TTTS story... 

The baby in the picture below is Lily.  She is my TTTS Survivor.  Last month was her first birthday and we raised money for Tamba’s new TTTS Appeal by asking people for donations instead of birthday presents.  We raised £200 and are proud to be able to do something to help fight this devastating disease.

At my 12 week scan I was shocked, but happy to discover I was having twins.  I felt like we were special and even more so when we found out they were identical.  There was a slight difference in size between the two so I was to have weekly scans.

Even though TTTS had been detected at week 17, it was mild and I felt reassured at each scan until week 22 when instinctively I felt something was wrong.  Nothing showed up but my sonographer asked me to come back in three days to put my mind at rest. Three days later I was stage 2 TTTS. Twin 1 had polyhydramnios. Twin 2 was 'stuck' with no measurable fluid. No visible bladder. We were told to go to kings college hospital first thing the next morning for laser surgery. By the time we got to London we had progressed to stage 3. Twin 2 had cord flow problems. The blood vessels were successfully lasered and I had 2 litres of fluid drained. I had a scan an hour after the surgery to check that both babies were alive. They were!

I had a scan a week later which showed the fluid was evening out nicely, all was looking good but the risk of premature rupturing of membranes was there for six weeks post surgery. I left work and took things easy. Six weeks passed and then, when we got to the 30 week mark we celebrated by buying a double buggy and lots and lots of clothes. We felt like the luckiest people in the world.

I started having contractions at 32 weeks, I went to hospital and was put on a monitor, babies were fine. I was told as my contractions were strong and regular they wouldn't try to stop my labour. I was given steroids to help develop the babies lungs. They were scheduling me in for a c-section that day. I wasn't too worried as I knew how great the babies chances were at 32.

I was put back on the monitor. They were struggling to find twin 1s heartbeat. They said it was difficult because my heart rate was so high the machine was finding it hard to differentiate mine from the babies. They said she must have moved into an awkward position. They said the machine could be faulty. My consultant brought a scanner in. His face dropped immediately and he turned the screen away from me. There were no heartbeats. I was rushed into theatre.

I was anaesthetised and both babies were delivered within 6 minutes. When I woke up I was told that when they cut into me they found I'd had a massive placental abruption. They had tried for 20 minutes to save twin 1, Jessica, but had been unsuccessful. Twin 2, Lily had been resuscitated, had blood clots aspirated from her airways and was given oxygen and IV antibiotics. She is our miracle.

Me and my family's lives have forever been changed due to this horrible disease.

Although we lost our beautiful Jessica, our story is one of success.  Both our girls were strong, they were both survivors, we just fell at the last hurdle.

Thank you for taking the time to read our TTTS journey- Danielle Thompsom


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.

How you can help

You can help parents like Danielle by joining us in the fight against TTTS. Tamba is aiming to improve the outcomes of TTTS pregnancies through medical research. Help us raise funds for our research by donating to our TTTS appeal today. 

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