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Resources Centre / Twins Tips Introduction / Twins Tips / TTTS - A Personal Story by Amy Williams
TTTS - A Personal Story by Amy Williams

Amy tragically lost her twin sons only 2 days after a diagnosis of TTTS and has asked us to share her personal story to help raise awareness of Twin to Twin Transfusion Syndrome (TTTS). You can help by donating to the TTTS Appeal run by TAMBA, (Twins & Multiple Births Association) which will fund research to improve the outcomes of this very serious condition.

On November 17th 2014 I went to my usual fortnightly scan in Andover, at this stage I was 22+6 weeks. I had been quite uncomfortable in the two days prior to the scan but when I searched for what could be wrong online it all sounded pretty normal, especially with a multiples pregnancy.

At our scan the staff seemed quieter than normal and then asked us to step outside whilst they looked over what they had seen. This was not normal protocol in my scans and so I was immediately worried, we were then told that they had detected what they assumed to be TTTS, but that I would need to go immediately to Winchester to see my consultant.

When we got there we were seen by Martyn Pitman, and he diagnosed us with acute TTTS. He was very concerned about how fast it had set in and the severity of the condition. He referred my to Southampton for the next morning, however that night my waters broke at home.

I was taken back to Winchester Hospital and then once they had confirmed that my membranes had ruptured spontaneously I was rushed down to Southampton, to Princess Anne Hospital.

On November 18th my TTTS was confirmed as Stage 2 and my Feto-maternal medicine consultant Karen Brackley was left with no alternative but to perform an amniodrainage to attempt to reduce the pressure. 2.5 litres of fluid later and the pressure had eased, with my belly noticeably smaller, and I was booked in to see her the following day to see what happened over night and to discuss our options from here.

On November 19th I went to see Dr Brackley, she was most upset as the fluid had returned and the babies were in distress. I was advised that should my sons be born at this gestation that they would have very little; to no chance of survival, especially due to their condition.

Despite all the help we could give them, I went into labour spontaneously that evening and our identical twin sons Jack and Benjamin Bright were born at 8:48pm and 9:20pm. They lived for 7 and 5 minutes.

I wasn't even able to see them when they were born as I retained my placenta and needed to go to theatre immediately after giving birth. After having a 2 unit blood transfusion and numerous antibiotics, the day after, I got to see my beautiful sons for the first time.

They were perfect little people, just incredibly small, (they weighed 440g and 370g) it felt as though someone had knocked the wind out of me.

It took a few days to understand what had happened, we literally lost everything within 48 hours. We knew nothing of this condition, nothing to look out for and no idea what to do if we noticed something different.

It has been 3 months now since we lost our boys, everyday is different, and although I know that it wasn't anything that we did or could have done differently I still can't help but feel empty.

I am hoping that telling my story will help somebody to know what to look for, or how to act in the given situation. I only hope that by sharing this with others that we can help even one other family.

Yours sincerely,

Amy Williams

The Twins & Multiple Births Association (TAMBA) share information on Twin to Twin Transfusion Syndrome http://www.tamba.org.uk/TTTS and run a Twin to Twin Transfusion Syndrome Facebook Support Group. TAMBAs TTTS Appeal will increase awareness of the condition and raise funding for research to improve the outcomes for parents and babies.

"Every week we hear from families about the devastating impact of Twin to Twin Transfusion Syndrome (TTTS). Thats why we are helping to lead the fight to ensure a better understanding of how best to treat these vulnerable babies. Join us in the fight against TTTS as we try to help save babies lives." KEITH REED, TAMBA CEO

Tamba's Twinline 0800 138 0509 may be able to help you with professional support and they also have a bereavement support group. Tamba have access to a number of consultants who work with twins and their families so may be able to recommend someone to provide help and support.

TwinsUK Resource Centre (Twins Tips) also has some additional articles that cover Twin to Twin Transfusion Syndrome in more detail.

Mono-Mono Twins High Risk Pregnancy

Twin to Twin Transfusion Syndrome

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