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History of the Twin to Twin Transfusion Syndrome Foundation

The Twin to Twin Transfusion Syndrome Foundation is a registered 501(c)(3), incorporated, tax-exempt, international nonprofit organization approved by the federal government. It was founded in 1989 as the first and only nonprofit organization in the world solely dedicated to providing immediate and lifesaving educational, emotional, and financial support to families, medical professionals, and other caregivers before, during, and after a pregnancy diagnosed with twin to twin transfusion syndrome. The Foundation is dedicated to saving the babies, improving their future health and care, furthering medical research, providing NICU, special needs and bereavement support, and keeping families together the way twins are meant to be.

Mary Slaman-Forsythe, of Bay Village, Ohio, founded the organization as a promise to her twins following a twin to twin transfusion syndrome pregnancy she experienced in 1989. The twin to twin transfusion syndrome claimed the life of her son Steven James. His identical twin brother Matthew Steven survived and is now a healthy 14 year-old. Back in 1989, just one week after the joy of learning they would be having twins, Mary and her husband Steve had that joy replaced by fear when the diagnosis of twin to twin transfusion syndrome was made in their twins. They left the physician's office advised that 'there was nothing that could be done.' When they then requested more information, only a single medical article had been previously provided, they were told that although a stack of medical articles were available on twin to twin transfusion syndrome, none would help. Mary and Steve felt hopeless, especially since they could not even comprehend the one article they had. Professional counseling was not offered after the diagnosis, nor two months later when baby Steven James (the donor twin) passed away inside the uterus. Mary spent six and a half months on bed rest without a soul to confide in about her fears and profound grief for Steven. From 26 weeks gestation, she continued to carry one live baby and one that had passed away. Sometimes when Matthew would move she would feel little Steven even though she knew he was not alive. Months passed and no plans were made for the unique delivery of the family's twins. Mary lived in complete terror that her second baby would not survive. The twins were born on December 7th, 1989. Little Steven was brought into the recovery room for a 'brief' visit with his parents. Mary later asked for a private room so she and Steve could visit longer with their son. As Mary held little Steven in her arms, she promised him that he and his twin brother Matthew would be known and remembered and that she would find the answers. Mary never said good-bye, only I love you. She knew the fight against twin to twin transfusion syndrome was enormous, but that it wasn't bigger than a mother's love. Steven and Matthew's promise has become Mary's life conviction.

On Sunday, September 13, 1992, the Cleveland Plain Dealer, Ohio’s largest circulated newspaper, published a Sunday edition, front page story entitled 'For Matthew and Steven' (attached). The story was reprinted through the Associated Press across the United States. Millions of people were made aware of twin to twin transfusion syndrome and the Foundation, and more than 75 inquiries were made to the Plain Dealer for a phone number. One Cleveland woman said, "It's been over twenty years, but….now I know why. Thank you for changing my life." Others expressed anger for never knowing there were new treatment options that may have saved or prevented birth defects in their twin to twin transfusion syndrome twins. Couples across the country unanimously confirmed the need for The Twin to Twin Transfusion Syndrome Foundation to provide education and emotional support, and to foster research into one of the most challenging conditions of contemporary obstetrics.

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Updated List of Questions

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