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.