Twin-to-twin transfusion syndrome is a heartbreaking condition that can turn the joy of a multiple-birth pregnancy to despair in a flash.
Sadly, from time to time, we hear from mothers who say they had never of heard of TTTS until it was too late; they lost one or both babies. Although we usually run at least one “Special Miracles” TTTS story every year, we continue to hear from readers: Why don’t you do stories on TTTS? We realize that TTTS is a tragedy unique to multiples. Therefore, we hope you find this Web page—our newest TTTS resource—a help and a comfort. And spread the word on TTTS… all parents of multiples and their friends and families can be prepared to help women who may face TTTS.
According to the TTTS Foundation, there are at least 4,330 TTTS cases per year in the U.S. alone, with over 8,500 babies affected. Without treatment about 80% of twins with TTTS die, either in the womb or postnatally. In addition, twins who survive are at risk for having severe cardiac, brain or developmental problems.
We don’t know what causes TTTS, but it only occurs in monozygotic pregnancies in which twins share a placenta… about 10% to 15% of them. And we don’t know why it affects some monozygotic pregnancies and not others. We do know that the blood flow is uneven from twin to twin across the vessles on the placenta. And we know several ways to treat it. In the last 20 years or so—ever since the advent of ultrasound and Dr. Julian DeLia’s pioneering of fetoscopic laser coagulation—our knowledge has grown tremendously.
TWINS Magazine supports the NIH-funded study, The Twin-Twin Transfusion Trial, headed by Dr. Timothy Crombleholme, director of the Fetal Care Center of Cincinnati. For more information on this ongoing study and the recently completed Eurofoetus study.
The Fetal Hope Foundation is the number one resource for TTTS and other fetal syndromes. We highly recommend visiting www.fetalhope.org. The founders of the Fetal Hope Foundation have identical twin girls that are TTTS survivors and they know first-hand how emotional and helpless families feel. Get the HOPE you need by visiting their website today!
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There is hope for the TTTS diagnosis! My boys are happy, healthy proof. We’ve come a long way from MFM’s proclamation that if we did nothing, we would lose both babies. There were challenges – all the testing, weekly ultrasounds, surgery, bedrest…but our family pulled through. I felt blessed to meet my boys after carrying them for 36weeks5days and to bring them home after only 5 days in the hospital! Pregnancy complications are so scary and frustrating, thank goodness for modern medicine — I wouldn’t have my boys today if we lived in an earlier time.