December is international Twin to Twin Transfusion Syndrome awareness month
On Dec. 7, 1989, I gave birth to my identical twins. I held them in my arms and promised them that they would be known and remembered and that I would find the answers. Matthew Steven survived. Steven James passed away. The experience was absolutely devastating.
My promise led me to start The Twin to Twin Transfusion Syndrome Foundation in Bay Village. It is crucial for women to get an ultrasound in the first trimester to identify multiples and then to determine whether there is one placenta or two. TTTS occurs when there is one placenta, extremely rarely with two, where the placenta randomly contains abnormal blood vessels connecting the circulations of the twins. The placenta sends too much blood to one baby, creating excessive amniotic fluid (as seen on ultrasound and felt by the mother), and too little blood to the other baby creating little to no amniotic fluid.
Both babies are at risk for heart failure, from an overloaded cardiovascular system or severe anemia. TTTS is not hereditary or genetic, nor is it caused by anything the parents did or did not do. It is not something the babies do to each other. TTTS can happen to anyone. The risk of TTTS is at least 20 percent of multiple pregnancies that share a single placenta.
I never want another mother to be told there is nothing that can be done, as I was. My doctors knew of a laser surgery to correct the placental blood vessels, but chose not to tell me. They told me about amniocentesis, draining the extra amniotic fluid, but said it didn’t work. Both these treatments are used frequently today and were available then. I was robbed of my son Steven not only because of this evil disease, but also because of the negligence and ignorance of my doctors.
In the last 26 years, my foundation has directly helped close to 20,000 families and many hundreds of thousands via our website. We are the first and only international, nonprofit organization in the world solely dedicated to fighting TTTS. My promise to my sons is my life’s conviction. The Terminal Tower was lit blue on Dec. 7 to help increase awareness of the fight against TTTS.
For more information or help, please contact me at tttsfoundation.org or 800-815-9211.