Twin to twin transfusion syndrome affects 15% of monochorionic identical twin pregnancies. We estimate 4,330 cases annually in the U.S. (most definitely much higher) so parents are not alone. It occurs from abnormalities in the twins' shared placenta that occur spontaneously and, as far as we know, cannot be prevented. The outlook for twins with TTTS was hopeless over 20 years ago, but now we have the ability to diagnose the condition early (with ultrasound scans) and implement treatments that will ultimately lead to most of the twins surviving and being healthy. TTTS is still regarded, though, as one of the most challenging problems in modern obstetrics. For parents, they have been forced into a high risk world that no one ever talks about or that they could ever be prepared for.
We strongly recommend that you help your parents create a medical plan of action from the moment the twins are determined to be monochorionic. The expertise and interest in TTTS varies widely among doctors. It is considered a 'rare disease' so most physicians see only a few cases a year if at all. If you are reading this book, however, we know that you care about this cause and you are willing to fight with your patient to save their babies. It is crucial to listen to your patients who call saying they 'feel big', or 'feel a lot of pressure'. These statements need to be taken seriously and not be chalked up to it being 'just twins'. This is how women feel when they start to have TTTS. If they have a monochorionic placenta, BRING THEM IN THAT DAY!
Sadly, some of our TTTS parents have had to fight for their babies all the way with their doctors and insurance companies. We hope that the enclosed TTTS book will give you information and a new perspective to help to compassionately and effectively guide your patients to learn about and fight this terrible disease.