Dear Doctors, Nurses and Sonographers,
This book has been adapted from helping
parents, to helping you, those professionals that come into
contact with a diagnosed mother, or a mother who has the possibility
of being diagnosed, with twin to twin transfusion syndrome.
Our hope is that this material will help you provide emotional
and educational support to families that you have to give
such devastating news to.
We want to stress that in the 14 years
that we have been helping diagnosed families, now approximately
40 families a month, it is apparent that parents are most
helped in their state of shock by simply being provided with
the 'opportunity' to save their babies. They can't try to
save their babies if they do not have all the education about
the specifics of their pregnancy and where exactly they are
in the diagnosis of the syndrome. We encourage you to use
the enclosed questionnaire in letting them understand the
important measurements that will enable them to see if the
syndrome is mild, severe or somewhere in the middle.
When you diagnose a mother, we encourage
you not to use vague words such as 'too much or too little
fluid' but replace those words with the specific measurements
of the pregnancy that can help them create a solid plan of
action. They especially do not want to hear the about the
"wait and see' approach. Parents deal with numbers, options,
plans, and backup plans. I have yet to speak to a mother or
father, who cried at the start of a phone conversation with
me, that did not end the conversation with tremendous hope
and empowerment. This was achieved once they learned what
questions to ask their doctors and what the answers might
mean for their babies. The way they got there was by narrowing
down the huge diagnosis of twin to twin transfusion syndrome
to only what is relevant to 'their' placenta and 'their' babies.
Every pregnancy is unique with its placental share and the
number and direction of flow of the connections that make
the syndrome. They need to know that what happened to one
family is not necessarily going to happen to them. With the
Internet, the description of TTTS has become too huge and
overwhelming. Narrow down to the specifics, and you will save
time and energy helping your parents fight this problem.
Parents need to be the ones that make
the ultimate decisions of caring for their babies. To help
them, be sure to tell them that they are the best parents
in the world and that you know they will make the best decisions
for their children. Tell them that you know how much they
love their babies and that their babies love them back with
all their heart. Tell them, they will know how best to care
for their babies when they start to feel a sense of peace
toward a particular option.
The syndrome is unpredictable. But, we
have seen babies make it that would have been terminated.
We have even seen the symptoms go away from one appointment
to the next. Parents know there are risks to their babies,
but encourage them by letting them know there is
hope and that their babies can live and be healthy. Tell them
their babies are so very special and that they just need 'extra
special care.' These words really do help them psychologically.
If you advise in such a compassionate manner, your parents
will walk out of your office devastated and in shock, but
not crushed and paralyzed. In the end, they will know in their
heart that they did everything they could for their babies
after they have covered all the options in an unbiased way.
They will know that they looked into every treatment. Because
of this, they will be able to live with what ever decisions
they make. Not only will the parents hopefully have both of
their children to cherish forever, but if they don't, marriages
will be saved and souls will have peace.
Lastly, our most important message is
that we strongly advocate that once a monochorionic placenta
is determined, weekly ultrasounds from 16 weeks through delivery
is crucial even when a diagnosis of TTTS has NOT been made.
Not only will the frequency help with the parents' emotional
state, but it is crucial to look for problems with placental
share and lack of growth in the smaller baby as well as the
signs of the syndrome. Anything over one week is simply too
long. The key is to create a plan of action with backup plans
and to see the patient frequently.
The Twin to Twin Transfusion Syndrome
Foundation helps families full-circle through the diagnosis
of TTTS to the delivery of their babies. We have a 'Circle
of Care' group of sponsors that enable us to financially help
parents travel to get laser surgery. We help them if their
babies go into the NICU, or if they need special needs and/or
bereavement support. We specialize our services to families
diagnosed with TTTS so we can give them the best possible
care and surround them with others who have 'been there.'
Thank you for letting your families know
about the Foundation. Please let them go home with one of
our brochures so we can immediately overnight to them the
'parent version' of this TTTS book. God bless you in all the
work that you do to save babies and thank you for your time.
Most Sincerely,
Mary Slaman-Forsythe, Founder and President
The Twin to Twin Transfusion Syndrome Foundation
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