Twin to Twin Transfusion Syndrome (TTTS) is a rare but life-threatening condition that affects 10 to 15 percent of identical twins that share a placenta.  If untreated, 90 percent of babies are likely to die. Even with treatment, 50 percent of surviving babies are likely to be disabled or have a long term condition.

The blood vessels within and on the surface of the shared placenta connecting both twins should allow blood to flow evenly between the babies so that each baby receives the same amount. However, in TTTS, part of the blood flow is diverted from one ‘donor’ twin to the other ‘recipient’ twin in what is effectively a blood transfusion (hence the name).  A lack of blood supply can affect the donor twin’s growth so they are smaller than average. The recipient twin is usually larger and has a higher blood volume, which can strain their heart as it works harder to cope with the extra blood supply.  To compensate for the excess blood, the recipient twin often produces a large amount of fluid. In contrast, the smaller donor twin can become stuck against the uterus wall with little surrounding fluid.

Our story

Finding out at 8 weeks pregnant that I was carrying identical twins was the best, most exciting news ever.  After weeks of excitement and pre-planning we received devastating news at the 20 week scan.  The scan showed that there was a significant difference in the amount of amniotic fluid surrounding the babies.  Further scans at the Heath hospital in Cardiff confirmed that our identical twin boys had the rare problem of TTTS.  Being told that it could be life threatening for the boys and that it could develop quickly from a mild case to a severe case in the matter of weeks was terrifying, and indeed this is what happened to us.  At 20 weeks, we were a very mild case and the doctor was hopeful that all would be ok and we hoped that both our boys would be born healthy.

Our care was transferred from the Heath to Bristol hospital at 21 weeks, as a precaution in case the TTTS developed further.  However, by 23 weeks, the TTTS had progressed and evidence from the scans showed that our babies’ lives were at risk. In order to try and save the twins, laser surgery to the blood vessels in the placenta was the only option we had.  This posed a risk to both twins, and following the surgery, we spent 3 agonising days waiting to find out whether the treatment was successful.  At 24 weeks we were given the heartbreaking news that we had lost one of our twins.  Jac hadn’t survived the laser treatment.  We were left devastated, heartbroken and numb.  JAC - yn ein meddyliau a'n calonnau am byth

What is the TTTS Appeal for?

Currently there is too little research conducted looking at the most effective treatments for TTTS in the short or longer term.  There is no comprehensive outcome data collected and published in the UK so doctors cannot compare what is working best and why.  There are also no longer term follow ups to understand the longer term consequences of individual treatments. That is why TAMBA are partnering with St George’s hospital and other fetal medicine centres throughout the UK to set up a UK-wide registry of all TTTS pregnancies, their treatments and outcomes.  A comprehensive set of data can then be collected and analysed. Dr. Asma Khalil, from St Georges’s hospital, who is leading this project, said, “This will help to build a true picture of TTTS cases in the UK, the survival rates and outcomes.  Crucially, a national UK Registry will provide a tool to assist the improvement of clinical skills and practice and therefore help to provide better patient care at a local, regional and national level. It will also establish a platform to allow long term follow up of TTTS survivors at a national level showing the longer term neurodevelopment outcomes.  The data will also be invaluable for future ongoing research into TTTS, for example, the longer term consequences of individual treatments.  The TTTS registry will be a UK first and is the most practical way of driving improvements in the next few years and longer term.