|
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. |