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We are so deeply sorry for your loss.
Twin to twin transfusion syndrome is such an evil disease.
It does not care who it hurts and only affects those that
want their babies more than anything in the world. We want
you to know that we will never stop fighting it and we will
honor your babies in doing so.
No one was ever meant to experience life
and loss at the same time. They are two emotions that completely
contradict each other. It is very normal for many mothers
not to feel joy when their surviving baby is OK, but relief.
The joy is there of course, but grief for his or her twin
overtakes joy. It is OK to cry and feel the deep sorrow even
though you have a baby to care for. You may have your baby
in the NICU and not even home yet. Your fear and feelings
may be towards that child. When you bring that baby home,
you will see your feelings gravitate back to your baby that
passed away. Your feelings are going to be all over the place
and that is normal and OK. You are not going crazy.
Everyone in the Foundation has experienced
twin to twin transfusion syndrome with all different outcomes.
Those of us that have experienced the loss of one of our twins
or triplets, are ready to talk with you and let you know you
are not alone. Maybe you are feeling guilty, don’t know
how to celebrate their birthday, or don’t know what
to say back to those that so hurtfully say, “At least
you have one.” Maybe you just can’t get out of
bed in the morning and you need to know that ‘neither
could we’. We have been there and can help you. You
are not alone.
The Twin to Twin Transfusion Syndrome
Foundation has a very supportive bereavement packet that we
can send to you that has been written by parents that know
your sorrow because they have lived it. They want to help
you. Included in the packet are booklets about anger, father’s
grief, stress on marriages, how to get through holidays, how
the mom can best help herself, poems, and more.
If you need another mom to talk with please call
the foundation at 1-800-815-9211.
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