The enclosed protocol was written with the help of Dr. Kurt Benirshke of San Diego, California. Countless times we speak to families who try to gain more knowledge about their pregnancy only to learn that their placenta was thrown away. This is not acceptable because all of the answers to 'why' are being disposed of as well. In addition, crucial factual information about the syndrome to help further research is also being discarded. Twin to twin transfusion syndrome is the most devastating problem facing multiples today. More accountability needs to take place to fight this disease and gathering the medical data is crucial.
Dr. Benirshke has outlined for pathologists the steps needed to be taken to correctly analyze a monochorionic placenta for the anastomoses that make the syndrome, the placental share to each baby, and other important data. We strongly recommend you to take this protocol directly to the placental pathologist at your hospital prior to the birth of your babies. Tell the pathologist that the placenta will be coming to the department in your name and that this test needs to be done to complete the registry and research for TTTS. This information will also immensely help you to get more information about the 'why' TTTS happened. Don’t let the hospital just throw your placenta in the trash. Don’t let the doctors tell you that pathology will study the placenta, they don’t know what to look for and most are not trained to identify TTTS. They may get the placenta and they may be able to tell you the placental share, but beyond that will not happen unless you give them these instructions.
We work with pathology departments frequently. If there is ever a placental pathologist who feels the are not able to successfully complete the protocol, contact the Foundation. It is sometimes possible to ship the placenta to Dr. Benirshke himself through the Foundation.
We understand how tremendously busy you are, but taking this one step to ensure the correct analysis of the placenta will not only further much needed research, but will later give you much more peace of mind, no matter what the results say.
To view the protocol, click the link in the box above. To get a copy of the Official TTTS Placental Protocol you may contact the Foundation at 800-815-9211 or 440-899-8887 as well as use the following e-mail address: