By ELISE McKEOWN SKOLNICK
A Twin to Twin Transfusion Syndrome walk was offered at Austintown Township Park June 9 to help raise funds and awareness for the TTTS Foundation. The walk was organized by Jaime Stokes.
Not too long ago, Stokes was happily expecting twin boys, but that changed fast when she found out the twins were suffering from TTTS.
TTTS is a disease that affects identical twins sharing a placenta. As a result of sharing a single placenta, the blood supplies of the twins can become connected, so they share blood circulation. This can result in one baby receiving more blood flow, while the other baby receives too little. It often results in the death of one or both babies. There is no known cause.
Stokes was sent to a doctor in Columbus, only to be told she wasn’t a candidate for the surgery that could potentially save her babies’ lives. Within the next week, the boys went into heart failure.
“We are trying to bring more awareness to the disease,” Stokes said at the walk. “I lost my boys this past October. It’s very emotional. But I’m on the fight.”
TTTS survivors and their families traveled from as far away as North Carolina and Alabama to support Stokes’ efforts.
Brooke Myrick, of Florence, Ala., lost her son, Willis, to the disease before she even knew her unborn twins suffered from TTTS. She learned he was gone at a routine appointment. His brother, Walker, survived.
“The awareness is really important,” Myrick said. “We weren’t diagnosed. We just were thinking everything was fine. We were not told anything about twin to twin or that it was even a possibility.”
Myrick went on to say that women and doctors need to be more aware of the potential for TTTS in identical twin pregnancies. That’s why she made the trip to Ohio for the walk.
“We were just really blessed that somehow Walker was able to survive,” Myrick said.
The walk raised nearly $800 for the TTTS Foundation.