We found out we were having triplets at our 12 week scan. The initial shock gave way to excitement. We felt very blessed as we began to plan our future life together. 

At our 20-week scan we were told that our identical twins had developed twin to twin transfusion syndrome - a disease of the placenta that affects identical multiple pregnancies (https://www.tamba.org.uk/ttts/what-is-ttts).

We lost Alex and then Jake to a disease that ruins the lives of so many families. At only 22 weeks we had a long, anxious wait to find out whether our third little boy, Dylan, would make it. He arrived - happy and healthy - at 36 weeks. 

Over the next year we will be undertaking sport challenges (the first one is the nightrider 100km 6-7 June) and organising fun events to raise money for this important cause because we believe that one day no family will have to go through the pain and loss that we, and so many other families, have had to face. We believe that together we can tackle TTTS. 

We are asking for your help to fundraise for a TAMBA campaign to create a national TTTS registry, which will in turn improve patient care, support much needed research and help with the long term follow up of TTTS survivors.

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.  Eventually we would also try to replicate this model internationally.” 

Thank you so much for reading our story and for your support. Please contact me if you want to get involved.

Lynne, Justin and Dylan xxx