Being told that you are carrying twins or triplets is truly an exciting and blessed moment. You have feelings of being special or chosen. However, when you receive the news that the babies have twin to twin transfusion syndrome (TTTS), you are thrown immediately into a high risk medical world that no one ever discusses and rarely prepares for in advance. Just days or weeks earlier, everything was fine and you were happy. Now, suddenly, something is wrong.
The Twin to Twin Transfusion Syndrome Foundation is here to provide you with immediate information about TTTS including the meaning of the medical terms, the various treatments available, premature labor and other complications of multiple pregnancy, and the value of bed rest and dietary supplements. You will not be alone. We are all mothers and fathers who have experienced TTTS and are here to help you. Our hope is that because of our personal experiences, along with the expertise of our medical advisory board, we can make a difference in your behalf.
There is considerable hope for your babies because of research on TTTS over the last few decades. However, we must stress the importance of becoming informed yourself about TTTS and the treatment options that may or may not be made available to you. This information will empower you to make the best possible choices for your babies when you work with your medical team. Clear your mind and follow your heart. We urge you to create a medical plan of action, and then prepare to act upon it immediately.
On behalf of the organization, please remember that we are always here for you. I started The TTTS Foundation as a promise to my own twins, Matthew and Steven, so that no parent would ever hear the words, 'I'm sorry, there is nothing that can be done.' There is always something that can be done. You and your babies are being prayed for.
Founder and President
"If not for The Twin to Twin Transfusion Syndrome Foundation, neither of these angels would be here. We could never even begin to thank you. We will forever be thankful for our special gifts."
Laura and Jeffrey, Ohio
"I was 20 and 1/2 weeks pregnant when I was diagnosed with TTTS. We went home numb, in shock, and empty handed. The next day, we were given The Twin to Twin Transfusion
Syndrome Foundation's number and called. Within 24 hours, my husband and I had information on TTTS, treatment choices, statistics
on survival rates and neurological problems. This was the most important decision we've ever had to make. We had to make a decision
that we could live with if the boys didn't make it. The Foundation gave us so much; information, support, financial assistance, and
most of all hope and faith. I knew I could speak to someone who totally understood. I can honestly say, I don't know what
we would have done without them."
Lori and Brian, Minnesota