Twin to Twin Transfusion Syndrome Foundation, Inc.
Rating: 4.79 stars 39 39 reviews
411 Longbeach Parkway Bay Village OH 44140 USA
An international nonprofit organization solely dedicated to providing lifesaving educational, emotional, and financial support for families, medical professionals, and other caregivers before, during and after a pregnancy diagnosed with twin to twin transfusion syndrome. Dedicated to saving the babies, improving their future health and care, furthering medical research, providing NICU, special needs and bereavement support, and keeping families together the way twins are meant to be.
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Reviews for Twin to Twin Transfusion Syndrome Foundation, Inc.
I stumbled upon this site after I found out I was having twins. I thought to myself how sad it is for these people who suffered through such a horrible disease. Then around 20 weeks, I started to "balloon" and went in for a checkup to find that I too had TTTS. I was distraught, saddened, and felt helpless for my unborn babies. I found the site again and read it ALL. I found the checklist,the questions to ask your doctor, and the symptoms I might endure. I felt it prepared me for the unexpected and gave me a profound sense of hope and courage to fight TTTS! Thank you to this foundation. You do so much for others,you are MORE than deserving of more exposure! Give others hope to continue to care for the unborn!
The Chase Family
(Twins that were helped through the knowledge of the foundation: Cody James and Christian Wilson- born at 33weeks due to complications of TTTS in 2012, now thriving 2 year olds)
If I had to make changes to this organization, I would...
Give them more exposure to spread the word
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TTTS foundation was god sent for us. After two miscarriages, my husband and I were very excited about our third pregnancy for our first child and we were super excited when we learned that we were going to have twins. However, it was short lived as I was diagnosed with TTTS during the 16th week. We were shattered. Doctors didn't know what options we had and they went to the extent of discussing the option to abort. It was one of the darkest day in our lives as we just didn't know what options we had. Then we found Mary & TTTS. No exaggeration here at all, she spent 3 hours on the phone with my husband and I explaining what TTTS is and what options we have. It changed the course. With help from TTTS every step of the way, I got surgery done from Dr. De Lia during the 18th week. Our twins boys will be 5 soon. Happy, healthy & full of energy.This wouldn't have been possible without TTTS and Mary. Simply the best support system you can find for TTTS. They are great and we are for ever in debt for the joy they brought to our lives.
My sons were born at 30 weeks from a TTTS pregnancy. Everything I learned about TTTS, I learned from the Foundation. The Foundation does a fantastic job of supporting families and helping them through all stages of TTTS. It's information helped me be prepared for the possibility that one or both of my sons would have special needs (one did), and it gave me a community of people to talk to and work with. Mary Slaman, the director, is amazing and I cannot say enough good things about her.
When I was told my twin girls had TTTS I was terrified and clueless. Mary showed me support and provided education about this devastating news. I was put in contact with other moms going through the same journey. Without this support I don't know what I would've done. When my donor twin Violet didn't survive the surgery, the foundation provided unwavering support and grace. When my survivor, Valerie, was born at 25 weeks they did no less. Mary always made sure I had the materials and support I needed. At the darkest and lowest points in my life, the TTTS foundation provided hope, education, and choices.
The TTTS Foundation was the best discovery I made during my pregnancy and I truly believe is one of the biggest reasons that I am still pregnant with healthy Triplets, and about to give birth in the next few weeks.
I live in NYC where there is some of the best care in the world, and my specialists advised me of potential issues with the identical twins I was carrying. However it wasn't until I discovered the TTTS Foundation website where I was truly able to understand the disease, the possibilities, the treatments and the outcomes. Upon being diagnosed with TTTS at 14 weeks, Mary was the first person I called.
As the leader of this organization, she is kind, patient, generous, positive, caring and just has so much knowledge to share, which helped my husband and I (and ultimately our 3 babies) get through this difficult time. If it wasn't for Mary I would not have known very much about the disease or the treatments. My doctors were constantly impressed with my understanding and decisions and I can only thank Mary for giivng me the information & support to help save my babies.
My husband and I are eternally grateful and we plan to do all that we can personally to help the TTTS Foundation, and other families, in the future.
I am currently 28 weeks pregnant with identical twin girls. Our doctor began educating us early on, that in less than 20% of identical twin pregnancies, there is a chance that the twins can develop a condition called Twin-to-Twin Transfusion Syndrome (TTTS). Essentially, this is an unequal share of the placenta, undetected or un-diagnosed can be fatal to one or both babies. At 14 weeks, we were referred to a maternal fetal medical doctor for bi-monthly sonograms to ensure the babies are healthy and not at risk of TTTS. At my 18-week sonogram, my maternal fetal medical doctor saw some alarming differences with the twins compared to previous scans and he quickly referred us to specialists in Houston, Texas, for further examination and evaluation.
After 4 weeks of sonograms, echo-cardiograms, evaluations and expert opinions, I am finally released back to my home. I have maintained stability in Stage 1 of TTTS. This condition can progress very quickly, or it could actually maintain in Stage 1, or can actually correct itself in less than 10% of cases. I continue to see local specialists to monitor the babies.
Without the help of the TTTS Foundation, we would not have had the additional support and education to act fast for the continuous monitoring of our identical twins.
Mary with the TTTS foundation helped me not just financially,but for my emotional needs. The support from this foundation is extremely helpful with education and resources for this disease . I don't think I could have made it through if not for Mary and the TTTS foundation, I will forever be grateful!
The TTTS Foundation has been nothing short of a miracle in our life. We have just got in contact with this foundation and the support and love that this organization represents is incomparable.
Last year this time I was in a high risk pregnancy. I was carrying quadruplets and two of the babies were at risk for twin to twin transfuson syndrome. This foundation and the leaders and volunteers provided insight, education, care, and compassion throughout my entire pregnancy as well as after the babies were born.
Words cannot describe how thankful we are for Mary and the TTTS Foundation. Mary helped save our girls lives, that is something that we will never be able to repay her for. Mary was extremely informative, a wonderful support for this horrible disease. We talked nearly everyday during my pregnancy after diagnosis. Mary and the foundation made it possible for us to travel from Michigsn to Florida to see the doctor that we knew would save our girls lives. The work that Mary does is from the heart, she is a godsend and will continue to help Mothers and help save their children. We are forever grateful and will continue to support this amazing organization!:)
Thank you so much Mary!
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