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International Office
411 Longbeach Parkway
Bay Village, Ohio 44140 USA
800-815-9211

 


The Twin to Twin Transfusion Syndrome Foundation
4ll Longbeach Parkway, Bay Village, Ohio 44140 USA
Phone: 1-800-815-9211 Web: tttsfoundation.org
“Connecting the World to Fight Twin to Twin Transfusion Syndrome”


December 7, 2005

Dear Friends,

I experienced twin to twin transfusion syndrome (TTTS) in my first pregnancy in 1989 at the age of 24. I am now 41 and pregnant with my 5th son. Unfortunately, my twin son Steven passed away in 1989 as well as my son Teddy in a pregnancy last year. I know too well the sorrow of experiencing the loss of a child. I don't want any parent to experience it. Being pregnant now, I remember, even more vividly, how I felt at 18 weeks when I was diagnosed. I could feel my babies moving. I already loved them more than anything in the world. It takes me back to the feeling of being "newly diagnosed".

This pregnancy, I have surrounded myself with excellent doctors that are taking good care of me. I have had hyperemesis (severe vomiting and nausea) with each pregnancy. This time, my doctors did not wait an extra moment to get me on medicine and in the hospital for treatment. I have been at home with a medicine pump in my leg for the last 5 months to make sure that I did not have to suffer. How different that is from when I had TTTS. My doctors let me continue with hyperemesis until I was dry heaving every 3 minutes and could not stop. I lost 20 pounds. I finally got into the hospital and was diagnosed with TTTS and not given any hope. "It does not look good for one baby and probably both" they said. That was the extent of their treatment.

That is why this Foundation was started; to make sure that no mother or father ever hears the words, "There is nothing that can be done." For those that have experienced TTTS, I am sure that you could close your eyes and remember exactly the words said to you when you were diagnosed, what the weather was outside, and how the world stopped. It is a terrible moment that never goes away. We have to remember that moment, no matter how many years have gone by, so we can put ourselves back into the shoes of the newly diagnosed and compassionately help them.

My doctors knew of laser surgery, but never told me about it. They knew of amniocenteses, but said it did not work. We did not have the Internet, so did not know any different. If your experience was as terrible as mine was, you know how important it is to make sure that the newly diagnosed never experience that. And, if your experience with your medical team was positive, you know what a gift that would be to give to another parent.

Please help us continue our work that helps hundreds of newly diagnosed parents every year. Our website is the #1 site for immediate education and support to parents. The TTTS book we mail out is requested every day. We can't change the fact that parents will be diagnosed, but we can show them that their babies can make it. We can help them at least have a chance at life with treatment options and a plan. This way, parents know they have done everything they can to save their babies. Out of love for your own children, someone special in your life, or simply because you want to make a difference in the life of a child, please help us continue our work, and make a tax-deductible donation today.

God bless you,

Mary Slaman-Forsythe
The Twin to Twin Transfusion Syndrome Foundation
Founder and President

PS. One hundred years from now, it will not matter how much money you made, what kind of car you drove, what kind of clothes you wore, or how big your house was. What will matter, is how you made a difference in the life of a child. Please help us continue our lifesaving work by making a tax-deductible donation today. Your help truly makes a difference! Thank you so much.


 
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411 Longbeach Parkway, Bay Village, Ohio 44140 USA | 800-815-9211 | www.tttsfoundation.org