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09Sep 13

Twin-to-Twin-Transfusion – a difficult journey.

So what do you do when told you’re expecting twins?

You spend hours staring fixedly at that fuzzy black and white picture of two little lives growing inside your tummy, shaking your head in disbelief. Every so often you reach for the accompanying letter, reading the medical terminology over and over, waiting for it to sink in.

I immediately contacted everyone I knew with twins (I was lucky: a very good friend was in exactly the same position, and my sister-in-law had just had twins, too). They told me that the best book to buy for good, solid info was Twins & Multiple Births by GP Dr Carol Cooper, herself a mother of twins.

Then, in my case, you spot the words ‘monochorionic diamniotic’ on the letter and start googling. I soon discovered that my two little babies were sharing the same placenta (monochorionic, meaning one placenta), but each had their own amniotic sac (or ‘two bags of water’ as my mum kept saying). How lovely. All cosy in there together.

But, uh-oh, what’s this I keep stumbling across? An acronym that turned the blood in my veins to ice. A few initials that cause me to blub uncontrollably until my two-year-old drops his Thomas The Tank Engine and climbs up into my lap, staring at me, quizzically. Twin-To-Twin-Transfusion Syndrome, or TTTTS, is a rare condition that affects babies who share a placenta. It results in the transfusion of blood from one twin (donor) to the other. The donor twin can become small and anaemic, while the recipient twin has too much blood, and this can put a strain on the heart. If undetected and unmanaged, the outcomes are not good. Some of the stories I read online were totally heart-rending.

If you’re reading this, and you are carrying monochorionic diamniotic twins (or more), please do not do what I did. Instead, go to the TAMBA (Twins And Multiple Birth Association) website and sign up for their booklet on TTTTS  or go to the TTTTS Foundation’s website 

Most of all, do not panic. I had weekly scans and was very carefully monitored for TTTTS throughout my pregnancy. Everything was fine, but from the 16th week, when TTTTS can develop, I didn’t sleep easily.

Do you have experience of TTTTS? Could you share your story with our readers?


Kay's beautiful newborn girls

Kay’s beautiful newborn girls

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