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 to the doctors that care for parents
in these pregnancies to take this protocol directly to the
placental pathologist at your hospital prior to the birth
of the babies. Tell the pathologist that the placenta will
be coming to the department in your patient's name and that
this test needs to be done to complete the registry and research
for TTTS. This information will also immensely help your patient
if there is a loss of one or both babies to give them more
information about the 'why' of the loss. Doctors too often
underestimate the amount of acceptance parents would have
from the specific information about their pregnancy. This
is actually what they are craving for.
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 possible to ship the placenta to Dr.
Benirshke himself through the Foundation.
We understand how tremendously
busy doctors are, but taking this one step to ensure the correct
analysis of the placenta will not only further much needed
research, but give your patients 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:
research@tttsfoundation.org |
