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Create a medical plan of action. First, get an educational
packet from The Twin to Twin Transfusion Syndrome Foundation.
Talk with a representative of The Foundation
for education on the syndrome, treatments, bed rest, diet,
physician referrals, insurance, and other assistance the foundation
may have available to you.
Contact other families that have gone through
twin to twin transfusion syndrome and various treatment options
that The Foundation have to offer.
Contact other specialists who offer various
treatments for twin to twin transfusion syndrome that The
Foundation has to offer. Send them your ultrasound information.
Add them to your medical team.
Get a second opinion from another specialist
in your area.
Search the Internet for further information
that might help you.
Contact your insurance company to begin the approval
process for laser surgery even if you feel you will not have
it done. You need to save time in case you make that decision
in the near future. The Foundation can help you educate the
insurance company with our insurance packet. Just call and
tell us who to send it to.
Sit down together in a quiet place, hold
hands and look into each other's eyes. Ask yourselves, "What
decision is right for our babies? What decision can we live
with for the rest of our lives? What decision will give us
the peace... that we did all we could and there was nothing
more?"
Listen to that inner voice inside, and trust
it. The answers will come. We promise.
Once you have made a decision, then act upon
it immediately. Have the top specialists for that treatment
involved in your care so you know you are having the treatment
performed correctly.
Have, at least, weekly ultrasounds from 16
weeks through delivery of your babies. Even if the warning
signs for twin to twin transfusion syndrome have lessened,
continue weekly ultrasounds. The ultrasounds are crucial to
make sure the syndrome has not worsened or that further steps
to help your babies can be taken if it has.
Create a backup plan. After you have decided
what your initial plan of action for treatment will be after
being diagnosed with twin to twin transfusion syndrome, create
a backup plan. The backup plan should be thought of ahead
of time as a plan of action if the first treatment is not
working. If this choice is laser surgery, all the airfare,
hotel, insurance, and contact with the laser surgeon should
already be set in place so you can fly out within hours if
need be. The Foundation has a Circle of Care Program where
we can help with your travel arrangements. We are used to
working in an emergency situation.
Create an extended plan. This plan should
include a possible delivery date, will you deliver vaginally
or by C-section, when to give the babies steroid shots, what
are the warning signs of pre-term labor, can you have pre-term
labor home monitoring, what happens if you reach the goal
to deliver and things are going well, what are the signs that
you need an emergency delivery, bed rest and diet education.
Talk before your delivery about having your placenta analyzed
by pathology. The Foundation has created a twin to twin transfusion
syndrome Placental Analysis Protocol. This provides step by
step instructions on how to analysis a placenta to confirm
the syndrome and placental share. This information is crucial
to medical research and to filling out our registry. It is
how you will get your answers to why this has happened.
Visit the NICU unit and meet the neonatologist
as an educational precaution.
Know the sex of your babies and name them.
Being diagnosed with this disease throws parents into a medical
world that no one ever talks about or is ever prepared for.
Naming your babies is something that you can do that is nonmedical...
something normal and natural in every pregnancy. It is something
very special and meaningful and it will help you as you speak
to them and share them with others.
Be honest with your friends and family members
about how you want to share what is happening to you with
them. Surround yourself only with people who give you strength,
comfort, love, support and hope. It is OK to do this. You
need to concentrate on each other now and your babies. It
is a very personal time. Some people want a lot of people
surrounding them, others do not. Both are OK. The more you
can talk about what is happening will help you in the end.
If you would like us to mail a packet to a family member or
friend in order to help them understand twin to twin transfusion
syndrome, just notify The Foundation.
When
you cover all of these bases, you will find that
the overwhelming feelings you had at the time of the diagnosis,
will go away. You can then feel more in control and prepared
and able to concentrate only on the things that are relevant
to caring for you and your babies.
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