Diagnosed with TTTS:
A Letter to Parents

diagnosed with ttts

Letter to Parents

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 your 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 TAPS, SIUGR and TRAP) such as the meaning of the medical terms, 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 a backup plan, which we can help you with,  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. I promised that they would be known and remembered and that I would find the answers.  Due to negligence with my doctors including withholding information that would have saved him, my little son Steven passed away.  I have devoted my life to doing all I can to make it better for you than it was for me and The TTTS Foundation is my promise kept to my sons, the two little boys that started the fight against TTTS, TAPS, SIUGR and TRAP.