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 you 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 you, you have been forced into a high risk world that no one ever talks about or that you could ever be prepared for.
WE STRONGLY RECOMMEND
THAT YOU CREATE A MEDICAL PLAN OF ACTION FROM THE MOMENT YOUR
TWINS ARE DETERMINED TO BE MONOCHORIONIC, BECAUSE 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. You have to be your babies’ advocate. It is important to have consultations with a high-risk obstetrician (perinatologist or maternal-fetal medicine specialist), to have frequent ultrasound scans, and be aware of the TTTS warning signs. Do not sit back and listen to doctors or nurses who chalk everything up to it being ‘just twins’. Begin to educate yourself on the syndrome and the treatment options so if things get worse, or if an immediate decision regarding treatment is necessary, you can choose what you feel is the best for you and your babies. Follow that inner voice inside you, and trust it.
Sadly, some of our TTTS parents have had to fight for their babies all the way with their doctors and insurance companies. You want to know in your heart, now and for the rest of your life, that you did everything possible to save your babies. The Foundation is a pro-twin and pro-life organization that is here to help you and your babies in your fight every step of the way, with educational materials, emotional support, and professional referrals. We are here for you.