TTTS is a rare but potentially fatal condition affecting up to 15% of identical twins sharing a placenta.  Your support could help to reduce TTTS deaths by funding a UK first - a national TTTS Registry that is collecting data from all TTTS pregnancies (including TAPS and TRAPS).  This data is crucial for future research and treatment so that more babies survive. The Registry is run on specialist software and by specialist staff so your support is greatly needed.

                                     Twins Trust's TTTS Appeal

                                     HELP US FIGHT TTTS
Every week we hear from families about the devastating impact of Twin to Twin Transfusion Syndrome (TTTS). That’s 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.

TTTS is a rare, but potentially life-threatening, condition that affects about 10-15 % of identical twins who share a placenta(monochorionic twins).  TTTS can also occur in triplet or higher pregnancies that include monochorionic twins. If untreated, 90% of babies are likely to die.  Even with treatment, 10 - 20% of surviving babies are likely to be disabled or have a long term condition.

Blood passes from one twin (the donor) to the other (the recipient) in the womb. In most cases the donor twin may become smaller and anaemic due to not having enough blood supply. The recipient twin becomes bigger and has a higher blood volume, which can strain the foetus’s heart and lead to cardiac failure.

Monochorionic pregnancies should be closely monitored for signs of TTTS.  It can progress through the different stages very rapidly and a referral for amniotic reduction or laser surgery at a specialist centre may be necessary.

TTTS causes extreme worry and distress to families who are diagnosed and while some TTTS babies survive the ordeal, others, sadly, do not.  Also for surviving babies there can be a risk of development delaysand long-term handicap or complications. Twins Trust wants to do more to help families who are affected by TTTS.  

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 (or internationally) 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.

To address this we have partnered 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 will then be collected and analysed.

Dr. Asma Khalil, 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 neuro development outcomes. The data will also be invaluable for future ongoing research into TTTS, for example, the longer term consequences of individual treatments. Eventually we would also try to replicate this model internationally.”

The TTTS registry is a UK first and is the most practical way of driving improvements in the next few years and longer term.  Please join us in the fight against TTTS.  

For more information about the appeal visit www.twinstrust.org