After I promised my twins that they would be known and remembered and that I would find the answers, I thought long and hard how to create and build this Foundation. The approach that I decided on, and the one I truly believe in, is that you need to reach goals slowly, building life-long relationships with those who choose to work with us, not those we pressure into it. I believe that The TTTS Foundation is a ministry of God’s work and He is the Foundation that holds the organization together. All the glory goes to Him. The work we are trying to do is Eternal work in the sense that the fruit of our work lasts eternally and has deep meaning and purpose. I know that the work we are doing is God’s work and He will provide for us.
Our philosophy includes making friends with the people we help. We do this by listening to them and getting to know them. I want people to feel valued, appreciated, respected and heard. I want to build relationships and in doing so, put this disease on the map and then wipe it off clean. It is our experience over and over that by really paying attention to the people we are helping, they end up giving us many gifts of love and blessings in return. No matter what situation a person is in, we are there to do all we can to help.
Mary, 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 31 year-old.
Back in 1989, just one week after the joy of learning they would be having twins, Mary had joy replaced by fear when the diagnosis of twin to twin transfusion syndrome was made in her twins. She left the physician’s office advised that ‘there was nothing that could be done.’ When she then requested more information, only a single medical article had been previously provided, she was told that although a stack of medical articles were available on twin to twin transfusion syndrome, none would help.
Mary felt hopeless, especially since she could not even comprehend the one article she had. Professional counseling was not offered after the diagnosis, nor two months later when baby Steven James (the donor twin) passed away during pregnancy. 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 Mary. Mary later asked for a private room so she could visit longer with her 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’ The story was reprinted through the Associated Press across the United States. Millions of people were reached and 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.
