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.