At 20 wks I was told We were stage 2 TTTS . I had never heard of it and scared when the dr said I needed to see a specialist would have me set up to receive a call when to see one. Little did I know how serious this was but before I got home from the dr I received a call from the Hospital in Houston TX wanting me there the next day at 8am! Stunned and not knowing how I would get there since I had been off work and didn't have the money to go this foundation immediately went into action and made it possible for me to get from MS to Texas the next morning and not have to worry about a place to stay it was all arranged! Ms Mary spent many long calls talking me through things and keeping me sane! This was suppose to be a consultation but after their scans and Dr's checked me it was determined we was almost stage 3 and I was offered termination as my 1st option because the risks were high to lose both . I chose to go ahead with surgery and within the hour I was prepped heading to surgery to attemp to save 1 the other baby wasn't gonna make it the odds were so low! After surgery we all were shocked both twins had survived surgery but was given 24 hours after surgery to know if both babies would survive the surgery ... The surgery took almost 2 liters of fluid and closed 10 vessels but both my babies survived! I can't thank this organization enough because with the help I would not have been able to save my twins! My boys were born 33 weeks stayed almost 4 weeks in NICU but are healthy babies with NO health problems!
The Twin to Twin Transfusion Foundation has been a great resource to our family. While we did not know our twins had TTTS until birth, and were lucky that both survived, the TTTS Foubdation still provided great information so that we could better understand the syndrome and explain it to our girls. Mary works tirelessly to serve families and for that I am thankful.
We were so blessed to have The Twin to Twin Transfusion Syndrome Foundation available to help, guide and support us through this season in our life.We can not say enough about Mary, Terry and the doctors who took the time to speak with me while I was in the hospital helping me advocate Our care. The prayers, the books that were sent, the phone calls were such a blessing THANK YOU!!!!
Our babies were diagnosed with TTS on a Friday, we were told to be in Seattle for surgery by the following Monday, our 4 day stay turned into 12 days, our head nurse referred us to the TTS foundation, they provided us with hotel stay for the 12 days we were there but also with a support group that we desperately needed. Not knowing much about this condition was scary. Thankfully they were there to help us and have helped so many other parents and twins in need. Thank you.
The Twin to Twin Transfusion Syndrome Foundation is far more than a foundation. The TTTS Foundation is literally HOPE, LIFE, COMFORT, EDUCATION, FAITH, WRAPPED IN EMPOWERING MOTHERS WITH LIFE SAVING INFORMATION AND SUPPORT, IN THE MIDST OF A HOPELESS DIAGNOSIS OF Twin to Twin Transfusion Syndrome. One constant, steady, loving, mighty yet ever so compassionate person that makes the Foundation unique .. set apart from others.. is Mary Slaman. She understands the desperation in the expecting mothers voice, when The TTTS Foundation phone rings, or an email arrives, or a prayer request comes in, or posting to the Foundations facebook pages. Mary has lived through TTTS, she knows all to well, how the Mom on the other end of that phone call feels, and how desperately that mom wants to save her twin babies from this uncertain disease. I know this to be true, as I am one of the mothers. 14 years ago, during what my husband and I thought was a perfectly healthy normal identical twin pregnancy.. I was diagnosed with TTTS at 19 weeks, during a doctor visit for an ultrasound. We were blessed beyond belief to be expecting identical twin girls, our 1st pregnancy and twins. The sudden diagnosis of TTTS simultaneously accompanied devastating information about TTTS hopeless choices , hopeless outcomes. We walked into that appointment elated to once again see our two precious babies on the monitor, life, precious life inside my womb.. to be told that these to babies were in a life threatening situation where both could pass and probably would, even with medical intervention. The doctors explained that we had the choice of terminating our entire pregnancy, or selectively terminate one to save the other. We told the doctors that terminating our pregnancy or selective termination was absolutely NOT AN OPTION AT ALL. We wanted to save our babies.. please help us to save our babies. The doctors went on to explain options that could possibly help and explained that time was critical, as most cases of TTTS, result in loss of one or both of the babies. A nurse in the office, hugged me and put a business card in my hand..for The TTTS Foundation. It hurts so deeply to even write about that experience in the doctor's office that day.. it is like a blur.. I just remember feeling completely numb.. almost not able to breathe.. melting into my husbands arms.. my husband whispering into my ear that everything will be ok.. He just held me and i had my arms wrapped around by stomach.. trying with all my might to protect my babies. It was like time stood still, everything changed in those moments. Little did I know at the time..that the business card in my hand ... was our saving grace. I called The TTTS Foundation. I spoke to Mary, whose comforting voice, her compassion , whose words of hope, in spite of her loss, gave my soul life, inspired me to rise above the diagnosis, equipped me with a plan to help save my precious daughters. Mary sent a package via overnight mail that contained absolutely every detail about Twin to Twin Transfusion Syndrome. My husband and I were not alone. Mary equipped us with power over Twin To Twin Transfusion Syndrome. TTTS was no longer hopeless, it was something we could face with confidence knowing we could do everything humanly possible to save our babies.. while relying on immense faith and prayer to surround us. Mary understood that I was a mother of twins... at that time of 19 weeks gestation .. for the rest of my pregnancy and for always. She knew the love I had for my babies.. the most instinctive desire to save my babies lives. Mary helped me overcome the fear of TTTS , through knowledge at each and every doctor appointment, ultrasound, and procedure. My twin daughters miraculously survived TTTS, thanks to THE TTTS Foundation. They were born at 28 weeks gestation, weighing only 2 pounds each. My husand and I were also prepared for the journey through NICU ,, thanks to The TTTS Foundation. Mary sent a wonderful NICU book to me, even before my daughters were born, to educate us on every aspect of premature birth. Mary has been a consent source of hope over the last 14 years. She is still a very important person in our lives.. We, as a family, have immense respect for Mary and her life long mission to save lives and until a cure is found for TTTS. The TTTS Foundation is so close to our hearts. and always will be.
The TTTS Foundation is amazing!! They helped me and my family when I was at my most vulnerable state being pregnant with twins, afraid and confused. The foundation gave me knowledge, resources (financial, emotional,etc.) and support of every kind. I would not have been able to handle all I did without the TTTS Foundtion and Mary Slaman! I am so grateful for them!!!!
There are not enough words to describe how Mary and the TTTS foundation has helped me through the loss of my twins Robert and Christopher . I lost my twins in 2013 to stage 3 TTTS after having laser surgery. Sadly, I was not treated properly by my doctors which delayed my treatments. I unfortunately found out about the foundation when the disease became very bad and progressed with extreme speed. As I was getting tests done to save my babies Mary spoke with my family members explaining TTTS and comforting them. She spoke with me for over an hour when I lost my first twin Christopher . She cried with me, encouraged me and shared her own personal Experience with TTTS and the loss of her son Steven . After I lost my boys the TTTS foundation sent me bereavement material , personal notes ways to remember and honor my sons. Mary knew that I needed to spread awareness about TTTS as this helped me grieve . She set up an opportunity for my husband and I to speak at a medical conference to share our story and encourage doctors to monitor their identical twin patients more closely . This experience was so healing for us . She has kept in touch with me through the almost four years. The Facebook page she has set up for TTTS parents of loss has been my lifeline in hard times. I have cried and grown with the members on it. Losing Robert and Christopher was devastating . My heart will always ache for them . the TTTS foundation has been my hope and light through T his difficult and life changing loss . Thank you Mary , Matthew and all others at the foundation for your love and support.
At a time where I did not k no w where to turn TTTS foundation was there for me. I have friends, family, church but Mary and this foundation knew what I was going through and had the words and information that I needed when I needed it. I don't know if my twin girls would be here today if it was not for this foundation. I knew to rest and take protein shakes which I feel helped me tremendously.
I live in Thailand and when I was diagnosed with TTTS I was very overwhelmed and had limited local resources. I reached out to Mary Slaman and the TTTS foundation and she was there for me 24 hours a day, sharing her resources and knowledge and pointing me in the direction of experts who could help me. If I had a question at 2am her time she often still wrote back within minutes. I ended up having laser surgery and, sadly, one baby did not survive, and while I grappled with grief and confusion, Mary was there to offer empathy and caring support. She sent a giant package chalk full of materials and gifts to help with my grieving process. This is a truly superlative non-profit that combines loving compassion with a host of useful knowledge and resources to assist parents during one of the most trying, overwhelming and traumatic moments in life. I don't know how we could have gotten through it without Mary. Five stars!
We lost a daughter to TTTS over 21 years ago, and our surviving daughter has severe complications as a result. From the first we had heard of TTTS as a diagnosis through today, the Twin to Twin transfusion syndrome foundation has been an invaluable resource of information, advice, and care for our family.