Family and friends can be a very important source of comfort
and strength during a pregnancy diagnosed with twin to twin
transfusion syndrome. It is often difficult, however, to have
time to devote yourself to explaining the disease to them.
If you would like a packet mailed to anyone in the patient's
family, for example, the babies’ grandparents or close
friends, please call, or have the parents call the Foundation
at 440-899-8887 and we will mail this to them and talk with
them on the phone. If your patient is in the hospital, she
may call toll-free at 800-815-9211.
Family and friends need to know that twin
to twin transfusion syndrome is not hereditary or genetic.
The babies are completely normal and healthy babies, but they
are at risk for problems because of the disease in their shared
placenta. Twin to twin transfusion syndrome is completely
random and it is not something that was caused by something
the parents did or did not do. It is also not something that
the babies are doing to each other. Everyone is an innocent
bystander. These are often first concerns of families. Sometimes
family and friends say terrible things to parents not realizing
they are ultimately blaming them for the problem. Going over
these basic facts listed above can be helpful in ending hurtful
comments.
Family and friends can best give support
to the diagnosed parents by letting them know that they and
their babies are loved and are being prayed for (look at the
section on ‘quotes’). Sometimes nothing needs
to be said. Just having them hold the parent's hand and letting
them cry, or letting them be hopeful and encouraged, is more
meaningful then words could ever be. Friends and family can
help simply by explaining to the parents that they don’t
understand completely what they are going through or what
they need. Parents can tell them how they can help by saying,
“If you love me, then please trust me, that this is
what I need from you.” This will help make family and
friends feel that the door is open for their involvement and
they will be more then happy to do what the parents have said.
Ways that family and friends can help
diagnosed parents include: helping with other children, providing
meals and housecleaning, driving to appointments, helping
shop for the babies, bringing magazines to read while the
mom is on bedrest, making a cooler of food by the mom's bedside,
making gifts for the babies, buying things to make for the
babies like needlepoint projects, searching the Internet for
more information, bringing books from the library, and letting
the parents know their babies are very important and worth
fighting for.
When we go through difficult times in
our lives, we realize what life is truly about. It is about
our family and friends. It is about our children and being
parents to them and loving them. Encourage the parents to
try to surround themselves with people who bring comfort and
peace. Have them separate from those who add stress, who are
not willing to try to understand, and who cause emotional
pain. Those that truly love the parents and are close with
them will always be there for them no matter what. We always
remind them that God is with them. They are never alone.
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