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.
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