At 16 weeks we were diagnosed sIUGr and warned of possible early signs of TTTS.
Baby A’s fluids were about 6, baby B above 2. Dopplers were forward with elevated resistance for baby B
Baby A was showing signs of cardiomyopathy so my wife started nifedipine
After about a few days of research we found the TTTS foundation and Mary was able to talk to us for an extended amount of time shortly thereafter. We read stories on the Facebook group that gave us hope for a happy ending. We started upping protein and hydration and kept telling ourselves that we would get a happy ending like others in this group had gotten.
Next few weeks Fluid levels went down to 1.7 baby b, a was around 6. Baby Bs dopplers were intermittent absent
Cardiomyopathy resolved, but Baby b showed signs of brain abnormality. They confirmed baby b had a 2 vessel, velamentus cord
At around 20-21 weeks, their fluid looks better, up to 4 and 8. Dopplers looked “stable”. There was still intermittent absent flow, as there was throughout the pregnancy. The doctor pushed laser on us and says we have a window
At around 22 weeks. Constant forward flow, increased resistance. Fluid is up to 5 and 6
We decide to take a wait and see approach pending baby B’s MRI brain findings.
At around 22 weeks Brain showed an abnormality but it wasnt dandy walker and in fact the neurologist said we shouldnt expect the abnormality to affect anything. What he did say is we fall into the category of microcephaly due to the sIUGR of the brain.
Our MFM and our regular doctor disagree with microcephaly. But our doctor said almost uniformly, babies under 1% that survive have neurological problems. And again pushes surgery on us which we scheduled thinking baby B wont have a chance at a normal life… Up until that week no one said anything about expecting 100% neurological defects absent dandy walker.
Additionally, this whole time we were told that if we were going to lose Baby B it would be somewhat predictable. But now we are being told it could happen any second in spite of the fact that the dopplers are “stable”.
I had lost hope. We scheduled the laser ablation. We knew that the surgery would likely mean that baby b would pass. But I felt we had no other option, and that baby B’s quality of life would not be good even if they did both survive by some sort of miracle.
But in the days before the surgery, my wife kept asking questions. Why is this the first time we are hearing that baby Bs condition almost UNIFORMLY causes neurological problems? What changed in the past few weeks to suddenly make this an emergency situation? If things are stable, why not wait it out and do the surgery when things start to look worse?
So we sent this timeline to the TTTS foundation on Facebook and we got a comment back from dr Quintero saying that he has not seen a strong correlation between siugr and neurological problems on its own. so he hopped on a call with us and explained it comes more from preterm labor. He also said, if we don’t have TTTS yet, and we are type 3 sIUGR and not type 2, then he personally wouldn’t recommend the surgery.
After talking to him and hearing the other comments form members of ttts foundation, we continued 2-3x a week monitoring and waiting to do the laser procedure only if things got worse. Which they never did (besides a couple some intermittent reversed flow which always seemed to resolve by next appointment) . We lasted all all the way until week 29+1 where they saw deceleration of heart beats in Baby B and put us in-patient for monitoring. We made it to 29+4 and delivered our perfect baby boys.
Wwithout this group, I truly don’t know how it would have shaken out.
I had quadruplet daughters who were all on one placenta. When my ultrasounds showed that two of the girls were tending toward TTTS, my high-risk doctor told me I wouldn't be considered an eligible candidate for the laser ablation surgery by the surgeon in my region. If their TTTS progressed, at least one of my daughters would simply die. So I contacted the TTTS Foundation, desperate to see if there was any other way. And was there ever!
The director of the TTTS Foundation has incredible knowledge about this syndrome and spent an unbelievable amount of time learning about my pregnancy, going over my ultrasounds, advising me about how to advocate for myself to my doctors, and giving me advice about how to combat the syndrome. In pregnancies like mine, time moves very fast. Complications arise before viability, and preterm labor happens early. The absolute wealth of information provided to me by the TTTS foundation was something I would never have tracked down all on my own during my very short pregnancy. But because of the timely and thorough advice I received, I had an extremely successful pregnancy.
I did end up developing TTTS between two of my daughters. At the advice of the TTTS Foundation, I adopted an extremely high-protein diet with intense nutrient supplementation. At my next ultrasound after diagnosis, the syndrome was gone. The foundation also referred me to a doctor who was a specialist in high-order multiples, and I switched to his clinic for the remainder of my pregnancy. I had a very successful outcome, delivering past 30 weeks with my smallest baby weighing over two and a half pounds at birth. My babies were considered very healthy in the NICU, and they were considered to have had the best possible outcome.
I will never forget how the director of this foundation counseled me over the telephone late at night when I was overwhelmed by the exhaustion and risk of carrying four babies, lightheaded and out of breath. She shared her knowledge and wisdom with me when I was the most scared I have ever been, and she helped me make choices that ultimately saved my pregnancy. I credit the TTTS Foundation with saving my daughters' lives. Now they are home with us and giving us immense joy every day. I've attached a few pictures so you can see how beautiful they are.
I credit the Twin to Twin Transfusion Syndrome Foundation with saving my twins' lives when they were in utero. I called them after being told there was no hope and I couldn't save the pregnancy and Mary and Foundation volunteers connected me to other parents going through the same thing, resources with options and information about potential interventions. This information and support empowered me to ask for what I needed to try to save the pregnancy and after bedrest and one small intervention the twins' condition in utero improved and I had a good outcome with both born healthy at 33 weeks. I know that even if I had had a different outcome, the TTTS Foundation connected me to support to not feel alone in my journey. The twins are 18 now and I'm so glad that people like Mary, the great TTTS parents I met, and the wonderful doctors who give expecting twin parents hope are out there. This is a wonderful organization!
This foundation was there for me when I was terrified and didn't know where to turn. I was living overseas as a military spouse when my babies were diagnosed with TTTS at 19 weeks. I was sent back to the States to seek medical care and was completely overwhelmed. This foundation took the time to explain everything to me and help me to understand the condition. They made sure I knew what to do next and provided me with the latest information. My sweet babies survived and I will forever be thankful for the help I was given during that very difficult time. My children are 16 years old now and blessing this world with their great senses of humor and kindness. I can't imagine life without them and credit the good Lord and this dear foundation with helping me from the beginning so I could make the right choices. Thank you.
We got diagnosed with ttts with our twin babies when they were 19weeks a year ago (oct 31,22).
when you get diagnosed with something like this, you enter a very rushed, uncertain, scary road. My sister found this group as soon as we shared the news with our family and soon, Mary (the founder) was in contact with me. Without her support and knowledge I wouldn’t be able to advocate for my babies. Her care stunned us, it felt as if she was fighting for the lives of our boys just as much as we were. After we had lost one of our boys, she walked us through that valley too. I constantly had doctors telling me I wouldn’t be able to see my baby after delivery, Mary said otherwise. Thanks to her advice, I was able to see my son and have the proper goodbye and funeral. I am forever grateful for the impact of this foundation. Thank you for your exsitance, for your care, and for the dedication to fight for every life!
Mary was amazing when I needed help the most. I found out my babies had TTTS when I was 18 weeks pregnant. She called me and offered help and emotional support. I learned a lot about the condition through her. Words cannot express how thankful I am that she was there to help me. Even though my babies did not make it due to the condition being too advanced, I am still incredibly grateful that this foundation did everything to help me save my babies.
The TTTS Foundation saved my twin daughters, we are so grateful for this amazing organization. I was 24 weeks pregnant when I found out we had TAPS and my local MFM doctor recommended that I be hospitalized and deliver my girls very early. I found the TTTS Foundation through Facebook and I spoke with Mary about what my next steps should be. She advised that treatment was available at Johns Hopkins Hospital and that the TTTS Foundation could provide a grant for travel costs if needed. I underwent 4 intrauterine blood transfusions and partial exchange transfusions under the care of Johns Hopkins Fetal Therapy Team. I am so happy that we found the TTTS Foundation and I can’t thank Mary enough. My girls are now 5 months old and are thriving.
Review from Guidestar
This foundation was a life saver for our family!! Our twin sons are now 26 years old…. And happy, healthy, successful men! This is thanks to the TTTS foundation… and Mary- who supported us all! The foundation provided us with support, information, and encouragement as we made the decision to have the surgery with Dr. DeLia. He saved our babies!! We will forever be indebted to all those who supported us through this… Mary, Dr. DeLia, and other parents of the TTTS foundation… especially Ann Klonicki! It is so important to have support from people who know exactly what you are going through!!❤️
It is with tears flowing down my face that I wish to say how very thankful I am for this foundation. Mary Slaman, who runs the foundation, is truly an angel from heaven. I had a very high risk and complicated pregnancy. My girls were mono twins. I also had twin to twin transfusion and growth restriction beneath the first percentile.ary fought so hard for me and my girls to have the laser surgery. I am not very blessed financially, so I was terrified I wouldn't be able to try and save my girls because I didn't have the means to travel 9 states away and have the procedure. This foundation graciously covered my expenses. And it saved my girls lives. I did eventually lose my smaller twin, but had it not been for this foundation, I'd have lost them both. I will forever be grateful and I will be sure that my surviving twin knows the tremendous role they played in her journey into the world.
Review from Guidestar
I found out about this group 3 years ago when I was on the verge of giving up when I learned that my twins had TTTS. We are thousands of miles across the country but they are all willing to extend their help to us but unfortunately due to Covid restrictions it was hard I lost the battle after few weeks. The helped didn’t stop there, They helped me out with my post partum journey, the groups they sent me to join especially Mary the founder is very hands on extending her hand to those who are in need. If there’s a chance to rate 100 stars ⭐️ I will definitely do it
Twin to Twin Transfusion Syndrome foundation is amazing! This group gets so much information out and has helped so many families keep their babies healthy! I was the first person with triplets to have the F.L.O.C surgery with Dr. De Lia and 19th person with whom he performed the surgery. Tense time in the life of my family, but the foundation had so much information and people with whom I could talk and that was so helpful and important! My boys were born 8 1/2 weeks early, but now they are strong, healthy men who are 31 years old. An amazing thing!
So thankful for the generosity we were blessed with from this foundation! Our Daisy Babies will soon be here and we are so grateful for everything the TTTS Foundation has done throughout our journey!
Review from Guidestar
We could not be more grateful to this foundation! The generosity and compassion received will never be forgotten! This wonderful foundation saved the lives of my nieces and possibly even my sister by providing all of the travel expenses and lodging thankyou so much they would not have been able to get to the hospital needed to save the babies had you not helped out!! Thankyou from the bottom of my heart ttts foundation!!!!!
Review from Guidestar
We are so grateful for this foundation! I thank them from the bottom of my heart because if not for them there is no way we would have been able to fly to Houston Tx as soon as we needed to. They covered cost of travel and lodging so we could get the procedure done and if not for that we would not be delivering both of our girls tomorrow! I can’t thank you guys enough!
Review from Guidestar
The ttts foundation has been a huge blessing to our growing family. They have helped with grants for travel and hotels for us to go to Huston a few months back to have a procedure done for ttts and to help save our sweet girls. Without them this could have gone so wrong. I am so grateful for them and their help. I have truly been blessed to have been told about them and be able to have had this privilege to be helped by them. We are delivering our girls tomorrow. Thank you Mary and the ttts foundation for everything you have done.
Review from Guidestar
TTTS foundation you have done a great work in the life of my quadruplets, with out you i would have lost all the four babies, i thank you TTTs foundation right from conception to their operation. may Godbless you and am proud to be part of you
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I just don't know what words I can use to tell about TTTS foundation for what they have done to me and my family.
My name is Dieudonne Richard and my wife is called Anderu monika from West Nile region in Northern Uganda, it was in March when we realized that my wife was pregnant with Quadruplets and this is some thing that has never happened in our lives and out clan. This created alot of anxiety and fear Among our selves. This was because we are both not working and am a social worker while my is a nursery teacher as you know in Uganda now for 2 years schools are not open and no source of income, all our hopes had gone and many friends advised us to abort the pregnancy because it would be difficult for us looking at the income levels we had, four babies were just too much for us but we just put our hopes in God. looking at the NICU situation in our hospitals I knew we were going to loose all the babies even the mother too, where there is no consistent power and only 2 NICU beds.
Until May 2021 when I started looking for support on who can help me cary this burden not untill when God directed my hand to write to TTTS foundation, surprisingly I received a reply from Mary who wanted to know more about the pregnancy and the condition of the babies then i told her every thing that she wanted to know about the pregnancy and the hospital Care in my district Westnile which is boardering DRC and South Sudan with no proper health care.
It was untill Mary suggested through her research scanned through the hospitals in Uganda and ended up picking a hospital called Kiwoko in central Uganda.
Right from the start when I told friends and families about our discussions with TTTS, no body believed us and nobody trusted TTTs saying this is a scam, these are thieves, these are whites who wanted to steal your babies. Though many were negative, I never lost hope, from our discussions I was able to notice some thing promising. Not until when they send transport for hiring ambulance, that's when people some how believed.
The foundation never left us the moment they knew my wife was carrying quadruplets, Mary was so helpful and the TTTS members could continuously encourage and give hope to us which made the babies go up to 7 months.
I thanks God for TTTS foundation, through their the foundation even send money to hire an Ambulance to transport my wife from home up to the hospital and since then, they have never left us.
Through TTTS they sponsored the operation for my wife which was done and the 4 babies were removed safely and my wife in good health. Though we lost one baby and the three are improving steadily, with the support from TTTS I can see the future of my babies getting bright.
The fact that the babies use 25 Diapers in day and 1 tin of Human milk fortifier every week. when I presented this to TTTS, they took the whole burden and are still doing.
The most painful and challenging thing to me is some one who you don't and never met before accepting to take such a burden, am so humbled and challenged.
I wish TTTS foundation and it's donors would extent their services to Uganda where many people are facing challenges. With what TTTS has done to me and my family, I will for ever be indebted to TTTS.
I appeal to donors please increase your funding to TTTS foundation such that they are able to help more and promise to do what i can to help.
LONG LIVE TTTS FOUNDATION LONG LIVE DONORS
I have volunteered time with TTTS, and I couldn't say more amazing things about the love and commitment that this organization provides to any mother or family in need. They put forth endless hours to spread their wealth of information to all. Their hearts are deeply involved in saving babies' lives.
Throughout my time on the board, I have witnessed The TTTS Foundation's dedication to assisting diagnosed families. I am proud to be apart of such a wonderful and caring organization.
My siblings and I (we're triplets) are TTTS survivors! Without this organization, we may not be alive today. The TTTS foundation does incredible work by providing emotional and financial support to families dealing with a TTTS diagnosis. Mary has been so kind and supportive of me since I have met her and begun fundraising for this organization.
I experienced a TTTS and SIUGR pregnancy. I had laser surgery at 17 weeks and my boys were born at 30 weeks + 1 weighing 3 lbs 13 oz. and 1 lbs 4 oz. with a 68% size discordance. I’m happy to say that they are healthy 4 year olds. I have taken in a volunteer role as the SIUGR coordinator. Through the foundation we have been able to provide support to other families going through this type of pregnancy. The Foundation has also covered crucial expenses for families in their time of need.
Review from Guidestar
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The TTTS Foundation is the place to go to find all information on TTTS, TRAP and sIUGR. The medical board of directors is composed of experts in the field who can guide you and provide interventions to treat TTTS. The TTTS foundation can connect you with other families who have gone through this type of challenging pregnancy and provide you the hope and support needed during a difficult time. The foundation also provides financial assistance for expenses related to treating this type of pregnancy whether it be travel, lodging or parking. The Foundation has saved many babies and is truly making miracles happen for families with this disease.
My friends and many more twins are alive today because of the amazing doctors and community involved in treating, curing, and bringing awareness to TTTS!
Review from Guidestar
Hello! My name is Grace Wall and I wanted to share about the TTTS foundation. I had a very difficult twin pregnancy and had 2 laser fetal surgeries during my pregnancy. The TTTS foundation proved to be a life saving resource for myself as well as my family. Hearing the experiences of other families truly made me feel like I was not alone in this journey, and helped to put my mind at ease. Mary was so compassionate and took the time to speak to myself and my fiancé about every single question you can think of. If any foundation is deserving of applause, it is this. They also helped me become an advocate for myself and my boys. I credit them with being a part of giving me the courage to continue to hope for my boys when all hope felt lost. My survivors are now 9 months. ❤️
Review from Guidestar
Hi I’m Nikki and I’ve had the pleasure of being introduced to the TTTS foundation even though it was under the most unpleasant circumstances, Mary has given me the hope and let me see light through this situation. I was diagnosed with stage 1 TTTS and our whole world was shattered at that point, we had less than 24 hours to make it up to the amazing doctors in Ohio from SC. Mary talked to me and my s/o throughout the travel and the stay and helped us with so many other things giving us more and more hope for our little boys futures. We got sent home around last week after being up the for a week with the help of the TTTS Foundation and even being home she’s followed up with us when she could, let us know that she was there just a phone call away, and she really made us feel so lucky to have her by our side through this journey. I’m going back to Ohio for more information and what the next steps are going to be whether we have the surgery now or not but Mary has been with us every step of the way and we couldn’t be more thankful to her and the foundation for helping so much and continuing to do so.
Review from Guidestar
I am so thankful for this foundation. They are helping my daughter during this frightening time. Thank you very much.
Review from Guidestar
This group has helped me understand so much of my boys condition as well as make me feel less alone in my time of hardship.
My identical twin girls were diagnosed with twin to twin transfusion syndrome at 17 weeks pregnant. TTTS is a rare but serious condition that untreated almost always leads to death. The TTTS Foundation provided the much needed resources and support while we went thru the most difficult phase of our lives. The TTTS Foundation helped connect us to people going through the same thing, checked in on us often and made sure to be available for anything we needed. I honestly can’t imagine going thru our pregnancy without them as a resource. Then when the girls were born at 27 weeks 4 days, the TTTS Foundation supported us even more by providing NICU resources such as books and blankets for our girls. They truly made a difference in our ability to go thru something so challenging! We will be forever grateful to them!
Review from Guidestar
At 16 weeks, in the blink of an eye, my image of a perfect pregnancy vanished before my eyes, when I learned that my baby girls we experiencing a rare condition know as Twin to Twin transfusion syndrome, causing an uneven blood flow between the twins. One twin receives too much blood (recipient) and the other receives too little (donor). If left untreated the recipient twin will experience heart failure and the donor twin will experience renal insufficiency, often leading to fetal demise if left untreated.
After receiving this news, I was devastated and started looking for support groups. I was immediately connected with the TTTS foundation. This wonderful organization
provided so much insight and support during the most difficult time of my life. They also helped me navigate my diagnosis and find the best treatment center. At 23 weeks pregnant I received the laser ablation procedure to correct the inappropriate blood flow between my twins, during the entire process the TTTS foundation served as an amazing sounding board for all my concerns. The surgery was successful and my healthy daughters were born on 4/13/2022.
I will forever be grateful to the TTTS foundation - When my world turned dark, the TTTS foundation turned on a light and guided me to safety. They are truly a great nonprofit
- Kristin
Review from Guidestar
My name is Hugo Alvarado and I am from Guatemala. I have a beautiful family with my wife and 2 small children. Our plan as a couple was the search for one last baby to complete our home, but the surprise of the arrival of identical twins was fascinating, I feel lucky.
It was all a new experience, my wife had some very different symptoms from her previous pregnancies: her belly grew too soon, lack of appetite, shortness of breath, inability to move, very strong abdominal pain, etc. To all this, our doctor replied that it was normal in a twin pregnancy, but in the ultrasound at week 17 he noticed a possible case of TTTS, we had no idea of the existence of this syndrome and all that it represented; When the doctor stated that, if confirmed, the only solution was a surgery that does not exist in our country, our hearts were broken.
We wasted no time and looked for the closest appointment with a high-risk specialist doctor, who confirmed the diagnosis of TTTS in its stage 2, made us realize how serious it was happening and the urgency of performing the surgery as soon as possible , but unfortunately staying in Guatemala meant only waiting for fetal death. We were devastated.
Despite having a stable and solid economic solvency in my country, the cost of surgery and continuation of treatment in the USA exceeded my financial limits, but God was by our side from the beginning; When I talked about it with my family, I received the support of my father and we decided to fight, betting everything on a double miracle; When we found out, many people had joined our fight.
It was too exhausting to process and get the papers to travel to the USA, and along with it contact a doctor who could receive us by making an appointment. Many doors were closed to us, but in God's plans was to find The Twin to Twin Transfusion Syndrome Foundation. Speaking with Mary Slaman and Paola Carolina our hopes were renewed, Mary put us in touch with Dr. Ruben Quintero who was immediately interested in our case and sent the confirmation of our appointment.
All this process took us 3 weeks that were devastating for the health of our babies, who reached stage 4 of TTTS, but God continued to guide our process and use angels for it. The Twin to Twin Transfusion Syndrome Foundation immediately purchased air tickets and lodging for our emergency trip. My wife was operated on at 20 weeks + 2 with corrective surgery for TTTS, and although the consequences of the syndrome were serious for both twins, God has worked a double miracle.
Since then, The Twin to Twin Transfusion Syndrome Foundation, especially Paola, have been in charge of covering the expenses of our lodging, food and vehicle. Today my wife is 32 weeks pregnant and continues her treatment with Dr. Quintero.
Our hearts are deeply grateful to Dr. Quintero, The Twin to Twin Transfusion Syndrome Foundation and all the angels that are part of this foundation, which God undoubtedly uses to give life hope to families like ours. Without them all this would not have been possible.
I truly believe that God has sent this organization to be angels on earth to help our precious babies have a chance to live. I am so grateful for your help with my wonderful nieces. God bless you.....
Oh gosh I can’t thank them enough for saving my twin granddaughters lives. LeeAnn and Ryan was sent to them by God. He showed them the way to these wonderful people and I will alway be grateful!
Hello, my name is Mindy Alvarado, I am from Guatemala. In search of our third and final baby, my husband and I received the wonderful news of a twin pregnancy. It was all like a beautiful dream, but suddenly my belly grew too large in a matter of days and the discomfort was inexplicable, and it was not until my 17 week appointment that my doctor told us that it was a possible case of Twin to Twin Transfusion Syndrome, and if confirmed at my subsequent appointment in three weeks, the only solution was an extremely expensive surgery that does not exist in my country.
Without waiting any longer, we sought a second medical opinion who confirmed the diagnosis in stage 2, also alerted us to the severity of the disease and the urgency of performing the surgery. This was terrible, frustration and pain invaded our hearts. In my country they did not give us life hope, but as a family we decided to fight for that hope abroad.
The visa processing experience was terribly exhausting, along with the internet search for a US doctor who could send us an appointment confirmation to justify the visa processing; and also raise the money for the cost of the surgery that exceeded all our limits.
But God already had his plans: during our internet search we managed to contact Mary Slaman from The Twin to Twin Transfusion Syndrome Foundation TTTS, TAPS, SIUGR, TRAP, who referred us to Dr. Rubén Quintero. We immediately got in touch with him and made an appointment, along with the visas to travel to the USA. Since that moment, the people of The Twin to Twin Transfusion Syndrome Foundation TTTS, TAPS, SIUGR, TRAP have been like angels accompanying us in this process, donating plane tickets, lodging, food and vehicle for my husband and me.
I arrived in the USA with 20 weeks + 2 and underwent emergency surgery, because after all this the disease reached its stage 4 and my babies could die at any moment. Today I am 32 weeks old and I continue a very strict control with Dr. Quintero, because the repercussions of TTTS were serious for my recipient baby in his heart; although his improvement is a miracle. All this time The Twin to Twin Transfusion Syndrome Foundation has taken care of us, we know that God uses these people as angels of light for this noble cause.
The Place where you can find hope, guidance,support, love and knowledge. Yes, that’s what the TTTS foundation did for us.
My wife and I were floored after our twins were diagnosed with TTTS at 18 weeks gestational age. We expected the pregnancy to be somewhat challenging, but this caught us completely by surprise. Immediately after the diagnosis, my wife and I both scoured the internet for information about the condition and treatment options available to us. The more we learned, the more concerned we became. My wife then came across the TTTS foundation and connected with Mary Slaman. This was one of the best decisions we made during this difficult period in the pregnancy. Mary provided such detailed insight and specific recommendations regarding treatment options and providers while we were considering laser ablation surgery and a cerclage procedure. We truly felt Mary always had our best interests in her heart and we will be forever indebted to her for the insight and connections she provided. Our twin girls were born at 34 weeks. After a short stint in the NICU, the girls came home and are now happy and healthy five month olds with plenty of energy to spare!
Reaching out to the TTTS foundation and speaking with Mary Slaman was the best decision I made when I found out about TTTS. The diagnosis and what it entailed were daunting and quite overwhelming, despite my background in the health care field. Mary’s passion for her work was obvious from the first time we spoke. She guided us every step of the way, serving as a beacon of hope through the many ups and downs of the twin pregnancy. At the same time, she provided an evidence-based, realistic perspective. Her vast knowledge in this area coupled with her strong will to help were life saving for our girls. Time and time again, she provided us with accurate information and recommendations when others were hesitant to do so. Mary is well respected by experts in the field. Her connections helped us obtain second opinions with world famous doctors specializing in complications due to TTTS. I will forever be grateful for all of the help from the TTTS foundation and Mary. She is truly an angel!
I was diagnosed with TTTS stage 1 in upstate NY when I was 26 weeks pregnant with my mono di twin girls. I had gained 11lbs in 10 days and was having terrible back, hip and belly pain. It took days of convincing to get my OB to see me and even after the diagnosis knew something wasn’t right. I had an amnioreduction and the fluid had reaccumulated after only 12 hours. Our doctor told us that the only thing we could do was wait and see how it progressed because after 26 weeks the children’s hospitals affiliated with our doc would not do an ablation, especially for stage 1.
My husband Bryan joined the TTTS foundation’s Facebook group and we received messages from Mary Slaman the very next day asking to speak with us. We spoke on the phone and she explained more about TTTS than we were told by our doctor. She urged us to get a second opinion. Mary gave us the number to Dr. Quintero in Miami, Florida and to our surprise he picked up immediately (it was Labor Day Sunday). He listened to our story and told us he would do the surgery for us. By Tuesday we we’re given an appointment for the next day in Miami. Mary and the foundation took care of all of our airfare and flight accommodations while we got ready and arranged care for our 13 month old son. At the consultation on Wednesday with Dr. Quintero we learned that I was actually in stage 3 TTTS and also had TAPS and SIUGR in the donor twin. We also we were told that the recipient twin was on the verge of heart failure and the donor was basically adhered to the surrounding membrane from having so little fluid. The ablation surgery was done that afternoon. Mary supported us throughout our trip. She gave me tips for pain relief and recovery and talked to us about what to expect. Fortunately we made it back to NY without going into labor but 4 days later our girls decided it was time to come into the world no matter what we did to try to stop it. Isla and Ava were born on September 13th, 2021 at 27 weeks, 5 days. Isla was 2lbs 9oz and Ava was 2lbs 3oz. They are now just over 1 month old and although there are struggles everyday, the girls are making progress. Mary has kept in touch since and we received gifts from the foundation for the girls as well as 2 wonderful books on the NICU, which have been very helpful.
We have a long road ahead of us but we know we wouldn’t be in this position, going to see our beautiful girls everyday, if it weren’t for Mary and the TTTS foundation. Thank you so very much for all that you have done for us!!
My wife has been diagnosed with TTTS, it’s so rare that many doctors don’t know about it. It’s only with TTTS Foundation’s help that we are able to save our babies. No parents should ever have to go through this process when it can be treated if it’s diagnosed early.
This organization provides support to families such as my good friend’s whose lives have been irreversibly changed by TTTS. It also helps to increase awareness of this devastating disease.
This foundation is a lifesaver for many parents who are affected by TTTS. The foundation offers tremendous support to those in need. They offer a wealth of information, mental health and wellness support as well as some financial support in specific cases. I lost my twin boys from TTTS after birth and this foundation helped me through this difficult journey of grief. There is a dire need for more attention brought to this disease that takes the lives of so many babies.
TTTS is a foundation who is there to support those that have lost infants/children of this terrible syndrome. We lost twin granddaughters (Amelia and Nora) four years ago to TTTS. My daughter and her family have supported the TTTS foundation, went to walks and donated resources and time to the cause. We miss our girls, Amelia & Nora each and every day. We know we will see them one day in heaven and that will be an amazing day
TTTS foundation was so incredibly supportive as we lived through losing our daughters, Amelia and Nora, to TTTS in 2016. Mary has been a true rock to our family as we braved the world after loss. This organization is a huge part of our lives and allows us to keep Amelia and Nora memories alive.
The TTTS Foundation offered an intangible support I will never be able to repay but will always hold dear to my heart. In October 2018 my twins were diagnosed with TTTS at 16 weeks gestation. I traveled to Cincinnati, Ohio where I had surgery to correct the TTTS at 18 weeks. I went into labor 4 weeks later. At the time, I had two older children at home and was traveling back and fourth between home and the NICU to see all four children. It was exhausting and overwhelming. I learned quickly I needed to be thoughtful with my time and only focus on what each day would bring. This took a toll financially but as a Mother, I felt God was asking me to just provide loving care to my children and the rest would take care of itself. God placed the TTTS Foundation in mine and my children's life and I know other families feel the same way. My twins, Keeley and Kambry will be 2 months old next month. They are currently still on oxygen but the doctors are hopeful they'll come off soon. I doctor told me many times through out their NICU journey that it was unheard of for 22 weekers to sail through the NICU journey without any major hiccups, but the fact that both Keeley and Kambry did so well and came home in the amount of days they did was truly a miracle. This doctor told me it was a testimony to the love they felt from having a parent next to them. Statistically, babies who have a parent at the bed side do better through their NICU journey than those who do not. It is extremely hard to rely on others to help financially, but I am humbled for the help I received to allow me to be just "Mom" during their journey.
TTTSF is a does great work. I personally know of several families that they have helped. I have referred my patients to them. I totally recommend families experience TTTS contact them for help!
You guys are a big angel to us and all
The people that need help with the babies under ttts situation
Review from Guidestar
Our identical twin girls Adria and Hazel were diagnosed with TTTS at our 20 week ultrasound. We were advised that we needed to act quickly in order to give our girls the best possible fighting chance. After processing the devastating news, we were quickly coordinating plans to travel out of state to Mayo Clinic to get the necessary laser ablation treatment we needed, working with Dr. Rodrigo Ruano and his team.
Through a mutual connection, we were referred to the TTTS Foundation shortly after the diagnosis. Upon reaching out to the foundation, were put into contact with great resources that included both emotional support, as well as financial support.
The foundation has better prepared us to navigate one of the most challenging situations we have ever experienced, and allowed us to focus on what is best for both Adria and Hazel. It has been a blessing not having to worry about the travel expenses that we incurred while seeking the necessary medical care we needed.
We will always be grateful for their work, compassion, and all they do to support other families dealing with this diagnosis! We are so thankful to have be referred and put in contact with them!
Great organization who has helped countless families over the last 30 years. They offer sound advice for talking to your doctor about TTTS and amazing emotional support during confusing and stressful times.
Review from Guidestar
Seventeen years ago, during the most precious time of my life, expecting identical twin girls, we were diagnosed with Twin to Twin Transfusion Syndrome. It seemed hopeless , until we were connected to The Twin to Twin Transfusion Foundation!
Mary Slamon and Dr. Julian De Lia, shared encouragement, and life saving information about TTTS. The months that followed were cherished and filled with faith and hope, because of the support from the TTTS Foundation.
My husband and I were equipped with knowledge to make the very best decisions in the course of my pregnancy with TTTS. The knowledge and education saved our twins lives. Our twins will be turning 17 in a few days! Every single day, since that diagnosis, we are grateful, for Mary's commitment to conquer and find a cure, save lives from TTTS.
We consider it a miracle that our twin daughters survived TTTS. We consider Mary from The TTTS Foundation to be our angel. We will support Mary and the foundation, future TTTS families, until there is a cure.
Review from Guidestar
Previous Stories
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.
My sons survived the Twin To Twin Transfusion Syndrome 16 years ago thanks to the knowledge of Mary and Dr.DeLia. They saved my sons life and I am forever grateful. Today I help educate women about Twin To Twin.
Review from Guidestar
Twin to twin transfusion syndrome has impacted four of the five babies I have carried. My first monodi pregnancy we tragically lost one of our daughters and have one survivor. She is beautiful but not a day goes by that I don’t think of her sister Cora and how wonderful it would have been to have them both here. I was connected to this organization through a support group joined as a result of this loss. As I write this review I am currently looking at my next set of monodi twin boys. They are 11weeks old and also were diagnosed with ttts. I reached out to this foundation the day after our diagnosis and without their guidance, encouragement, and various means of support, I truly don’t believe they would both be here. We were able to go to one of the top fetal clinics for ttts in the country and my boys are now healthy and beautiful. This foundation saves lives and brings hope support and comfort to so many. We could not be more grateful for this foundation!
Review from Guidestar
The TTTS Foundation did more than I could have ever imagined to help my daughter and her husband get through two of the most difficult pregnancies of their lives!
TTTS is a FABULOUS organization that truly helps parents in such difficult times. My daughter an identical twin had two identical twin pregnancies! Without a doubt TTTS helped in saving the lives of my twin grandsons and the gave enormous emotional support with my twin granddaughters. Thank you TTTS!
#HaileyandCora❤️ #HoustonandHarvey
#supportTTTSFoundation❣️❣️
Review from Guidestar
I cannot say enough about how grateful I am for this organization. Because of their generosity and desire to help families affected by TTTS, my dear friend was able to receive a surgery that ultimately saved her beautiful baby boys. This organization is incredible!
Review from Guidestar
We couldn’t be more thankful for this organization! They assisted in making the arrangements for my twin sister to have a procedure done across the country saving the lives of both her twins. I now have two beautiful nephews. Two miracles.
Review from Guidestar
So grateful for the unexpected help received from this organization by a friend who has had two pregnancies affected by this syndrome.
Review from Guidestar
This foundation absolutely, without question, saves lives. I cannot express how grateful I am for everything they did to help a beloved friend maintain a healthy pregnancy and made it possible that she could bring home two beautiful baby boys just this past week!!!
Review from Guidestar
Mary and the TTTS Foundation was extremely helpful and caring when my wife and I lost our twin boys 5 months ago. Mary put us in contact with some local families who had also experienced the same tragedy as us and just talking to other couples who know the pain of loss and were able to continue on and have multiple children after the fact has definitely been therapeutic. The foundation does great work to help with the grieving and let's you know that you're not alone.
My wife and I to our joy found out we were expecting identical twin boys in April, 2018. We were overcome with joy and happiness and started to plan for not one, but 2 little boys. We thought the pregnancy was going smoothly until we were sent for a scan with an MFM doctor who diagnosed us with TTTS and SIUGR. We had no idea about this disease and what it had in store for us. The fact that we were based in Thailand made things even more complicated. I tried to find out as much information as possible about TTTS and SIUGR while we were waiting to see a specialist doctor in Bangkok who we were told would be able to perform surgery to help the TTTS. The next day, after a scan by this doctor we were sent to a waiting room where we were joined 5 minutes later by a team of doctors who said the only surgery they would perform was surgery to terminate our weaker little boy who was a few weeks behind his brother in growth. We didn’t know what to do at that point as while we instinctively did not want to kill our little boy, we were told that his twin will never make it. Furthermore, we were told that my wife, who was around 18 weeks pregnant at the time was about to give birth almost immediately and that both babies would not make it. It is difficult to put into words what happened next because there are simply no words we can use to express our thanks and gratitude that we found an angel in Mary Slaman from The Twin to Twin Transfusion Syndrome Foundation TTTS. There was no professor, no doctor, no hospital and no person who we spoke to (and we spoke to a lot) who had as much experience, as much knowledge, as many resources and a big heart like Mary Slaman. We took all the advice we could from Mary and now, in October, 2018 our babies are side by side in NICU in Bangkok fighting hard but getting there. They were born at 29 weeks and are now 32 weeks old. Mary has been an inspiration to us, always there to answer our questions, always there to provide support, always there to help us get through the darkest of days and we owe so much, just so much to Mary Slaman and The Twin to Twin Transfusion Syndrome Foundation TTTS. We would not be here today and neither would our boys if it were not for all of Mary’s hard work that she puts into The Twin to Twin Transfusion Syndrome Foundation TTTS. Thank-you Mary
While I wish I had no reason to know what this foundation supports, my husband and I have a front row seat. Our twins were diagnosed with stage 2 TTTS at 23 weeks and while we moved as quickly as possible to surgically intervene, it wasn’t quick enough. We lost our donor baby and we’re absolutely devastated. I reached out to the TTTS foundation and Mary quickly responded and added me to a support group with parents who had also lost a baby. This group saved me. I was able to ask questions I couldn’t bare to ask anyone else, mourn, grieve, and just be surrounded by others who know the pain we are going through. This foundation does amazing things for s group not many people know exist. I feel as though I’m only getting started in learning about this terrible disease, but im thankful to have the foundation to turn to.
I am forever grateful to Mary Salman and the TTTS foundation for guiding me during my difficult journey and helping me bring my boys into this world. We were diagnosed with TTTS at 27 weeks. I flew to Florida and had a lifesaving surgery performed by Dr.Quintero. The information And support I received from the foundation and Mary were essential in my babies survival. Peter was born at 2.6 lbs and Maurice 1.6. Both in heart and kidney failure after 51 and 93 days in the nicu are here and doing amazing. Thank you will never be enough. You can read more of our journey at www.peterandmaurice.blog
I am in the UK and currently going through a TTTS pregnancy. I was really struggling and being driven crazy with worry and not being able to find any answers or help, then i came across a few posts from people mentioning Mary at the TTTS foundation, i googled it and eventhough it was in the US i decided i would email. I can honestly say its the best thing i’ve done, the support, knowledge and advice Mary has given me even from thousands of miles away has been incredible and i wouldn’t be getting through all this as well as i am without her. My girls have been up and down so many times and it has been and still is an absolute emotional rollercoaster, however Marys emails always keep me positive and i am convinced her advice on extra protein and horizontal rest is what has saved my girls from progressing to needing laser ablation so far. I still have a while to go but each day i feel more hopeful that my girls will be just fine and a big part of that is down to Marys help.
21 years ago I was a terrified 19 year old girl who had just previously learned I was pregnant with twins, and in less than a month of time, learned that they were fighting to live inside the womb. It’s truly sad to think that the womb is supposed to protect and nourish a life until it’s ready to survive on its own, and for my little girls and so many others like them, they were having to fight for survival in the one place they should have been the safest. In the whirlwind of medical procedures and getting insurance companies to cover the costs, there were a few godsends for me and one of them was Mary Slaman and the TTTS Foundation. Not only did she handle many arrangements for surgery and procedures, but she found the time to call me personally to reassure me I wasn’t alone, that everything happening wasn’t my fault, and that there was someone there to help. It was the most terrifying and most painful thing in my life, and it still is to this day and most likely always will be. My twins, Summer and Taylor fought for life valiantly every step of the way, but the effects of TTTS were too much for their little bodies to overcome, and sadly they passed away. They would be 21 years old today. For all of the memories of them and our fight, good or bad, I will always be forever grateful for Mary and her foundation’s aid throughout all of it.
In March of 2017, my brother and his wife received the devastating news that their twins were diagnosed with Twin to Twin Transfusion Syndrome... this was the start of a very difficult journey for them and unfortunately lead to the heart breaking loss of my beautiful nieces, Ava & Emma. The diagnosis of TTTS and the weeks to come were scary and confusing to my family and we didn’t know how to best support my brother and his wife. I knew we needed to better understand what we were dealing with and inevitably provide the grieving parents with resources and support beyond what I could offer. I stumbled across the TTTS foundation and asked to join their group, which led to an immediate response from the founder, Mary Slaman. She was beyond kind, resourceful, and responsive at a time we all needed it most. Mary and the foundation were a huge help in understanding TTTS and offered the support and resources my family needed. My brother and sister in law found much of their healing this past year through the foundation. Just this past April, they hosted a 5k fundraiser in memory of Ava and Emma. They wanted to honor their girls, give back to the TTTS foundation and hope to help others struggling with Twin to Twin Transfusion Syndrome. We are so grateful to have found Mary and her foundation - a light that was provided during a very dark time. Thank you Mary!
On April 17, 2017, my husband and I gave birth to two beautiful twin girls, Ava Rose and Emma Linn. Sadly, they both passed away a few hours later due to complications from TTTS. A few weeks prior to their passing, my family got in touch with Mary Slaman, the founder of the TTTS Foundation; Mary provided us with much needed education, support, and comfort during an extremely scary and difficult time. After our girls passed, we received a beautiful bereavement care package, filled with informational booklets, TTTS pamphlets, coping resources, mementos, among many other things. It was a wonderful gesture of kindness from someone we had never even met. Over the weeks and months after our girls' passing, Mary often kept in touch with us, offering us support and comfort. The TTTS Facebook page was a source of information and solidarity with other families who had gone through our similar situation.
The TTTS Foundation works tirelessly to inform the public about what exactly TTTS is, and how to help women and families with twins and higher multiples handle TTTS. There are warning signs to pay attention to, and steps to take with your healthcare professionals once you are diagnosed with TTTS that every family should be made aware of. The TTTS Foundation provides critical information on where to go throughout the country if you need specialized medical treatment to help your twins or higher multiples survive. I just wish my husband and I knew about this Foundation sooner.
The TTTS Foundation cares deeply about every single family that gets diagnosed with this disease, and offers so much support in a variety of ways, whether that's through personalized phone calls, social media support, mailed resources, etc. All of these efforts take time and money to fund, which is why they need our support.
I have been invested in this Foundation and would love to see more awareness generated so families with twins or higher multiples can get the help they need, when they need it.
I am attaching some of my photos of the 5K I organized this past April to raise money for the TTTS Foundation. It's called the "Love Blooms 5K" and it was held in my hometown of Melrose, MA. It was a huge success and I hope to be able to continue my fundraising efforts next year for this wonderful organization.
The TTTS Foundation deserves 5 stars and so much more!
25 years ago, I was surprised and overwhelmed to learn that I was expecting twins. All seemed to be going well, except that the doctors became someone concerned at 6-7 months in my pregnancy. I soon learned that they were concerned because it appeared
Twin B ( Matthew) growth seemed to be slowing and he was much smaller that
Twin A -( Daniel). They started performing test after test, monitoring me and the babies and were at that time unsure what was happening. They placed me in the hospital on Thanksgiving day of 1992 and mentioned that it appeared Matthew had passed and that I would probably go into preterm labor at 28 weeks, or that the deceased baby would pass blood clots to me/and possibly to Daniel, which could take both our lives, or that Daniel could end up with CP or blind if my body could not break down the blood clots. I was in the hospital for 2.5 weeks with no sign of preterm labor. I began preparing myself, asking lots of questions about what to expect, what to watch for and never stopped searching for answers. I read a lot of articles with the help of nurses who brought me information on Twin to Twin Transfusion was very rare at that time. That is when I read an article about Mary and her experience, fortunately there was a number for her in the article. I called her, we talked for several hours, and learned at that time that we both had a Matthew. I cried openly as she told me her story, I asked questions and she answered them. I kept in touch with her now for over 25 years and I hope that she knows just how much she helped me when I had no one else to talk to. She sent me information, articles and we have not lost contact. Once released I went to the clinic for a follow up and the student resident told me that he heard two heartbeats, which I became hysterical and asked for my doctor who came back in and did a sonogram to show me that Matthew was indeed deceased. The turmoil and loss set in again. I went through several blood tests, monitoring sessions, constant dr appts ofter 2 - 3 times week. On February 2nd they did a amio to see if Daniels lungs were mature enough to deliver ( NO NOT YET) as my body was fighting to break down the clots and very worried about both of our lives.. On February 11 -14th they tried inducing, nothing worked, I became very stressed and told them that GOD would watch over us and that when he felt the time was right, I would deliver both at the same time, they sent me home for 24 hours, brought me back at Midnight on the 14th during a snow storm and started the process again, 48 hours later, at 12:33pm and 12:34pm, I delivered both my babies without any family with me, I remember the tears flowing heavily as I delivered Daniel and soon followed by Matthew. The room was quiet and flowing with so many doctors and I heard Daniel's first cry.....I kept all of this to myself and later called Mary to talk to her and cried while telling her. I then had the opportunity to see both of the boys , hold them both, and then fill out the paperwork and plan a funeral and the whirlwind of emotions, both joy and saddness that filled my life, the emptiness of losing a baby, the love of my 2 boys at home and a newborn. I will never forget this experience, I will never forget the support and love that I felt from Mary, that I was not alone, and that it was ok to think about Matthew, love Matthew, and never forget him. 25 years later, I look at his things, remember holding both my boys, and then the time of answering everyones questions, and that everytime I walked into a room, it became very quiet. Just remember if you are dealing with Twin to Twin Transfusion, please know it is ok to cry, it is ok at be sad, it is ok to talk about both the babies, it is ok to grieve, it is not easy, but stay strong and believe that GOD has a special plan. You are much stronger than you believe, that is what Mary taught me. Love you always Mary and thank you for always being here for me before, during and everyday.
Every woman thinking about having a baby should be told about the TTTS Foundation on the chance they may become pregnant with identical twins and would need the valuable, life saving information available on the website. We unfortunately lost our beloved son Finley to TTTS before we knew of the foundation. After we lost Finley and took to the Internet for information, we found the TTTS Foundation. Mary immediately returned our email with much needed care and condolences. She sent us a beautiful bereavement package and has been there anytime we needed even still today, two years later. I honestly feel if we had known of the foundation from the beginning of our pregnancy our Finley would still be alive. I cannot stress enough that every woman pregnant with twins or multiples needs to be informed about the TTTS Foundation and it's website tttsfoundation.org.
In August of 2004 our babies were diagnosed with TTTS. I searched the Internet for more information about the disease and happened upon the TTTS website. I contacted Mary and with in 2 days, a wonderful packet of information was shipped to me. A week after being diagnosed, I went into preterm labor at 22 weeks and we lost both of our girls. I contacted Mary again, and she sent out a bereavement packet with incredibly helpful information.
In August of 2017 I found out that we were once again having mono-di twins. I cried at the ultrasound fearing that this set would develop TTTS and succumb to the same fate. I called Mary and she spent 45 minutes on the phone providing as much information about preventing TTTS as she could. She also got me in touch with Dr. DeLia, who is an invaluable resource.
I felt so supported and cared for throughout my entire pregnancy. Mary would often message me to check up and see how things were going. On January 14, two healthy baby girls (Sierra and Charlotte) were born. Without Mary's support and guidance, I doubt the outcome would have been as successful as it was. The TTTS is an invaluable nonprofit that provides resources and support for those struggling to fight TTTS. I'm so grateful that she founded this wonderful organization!
Mary was wonderful support after the loss of one of my twins . When you go through something like this you want to talk to someone who knows your pain. Mary knew my pain. She confortd me and taught me how to turn my grief into helping other family's . My suriviving son and our family now do a fundraiser every year and donate it to the foundation
The Twin to Twin Transfusion Syndrome Foundation and Mary Slaman were such an encouragement to us during our TTTS Journey. Our twins were diagnosed with Stage 3 TTTS at 15 1/2 weeks gestation. We had a laser surgery at 17 weeks. The foundation helped alleviate some of our financial burden during our 19 day stay away from home. Since our delivery, Mary has continued to offer support and encouragement to my family and many others. We are truly thankful for all that foundation does to support families going through this terrible disease.
Finding out that my sister was pregnant with identical twins was such an incredible feeling and then finding out about TTTS was frightening. We did not know what to expect. Our whole family was there to support her but without knowing much about TTTS it was hard. Through this foundation, my sister had incredible resources and amazing people to support her, console her, and guide her through her pregnancy and surgery and up until today. It has been over 2 years since my niece was born and my sister still keeps in touch and has made lifelong friends. Thank you for being there for my sister, brother in law and niece when they needed you the most.
One of my closest friends has two happy and healthy TTTS survivors thanks to the help and support offered through this foundation! Such a rarely mentioned disease deserves all the awareness it can get and this foundation is on its way to achieving just that!
When my daughter was diagnosed we had never even heard of this disease but thanks to Mary and all the angels at the TTS foundation we were able to get education and support! We will forever be greatful!
The TTTS foundation helped my wife and I get through our battle with TTTS. They provide support and advice to our family throughout the entire pregnancy. It would have been much harder to go through something like this without them being there.
I remember when we were first diagnosed with TTTS. It was a total shock. I immediately reached out to Mary at the foundation. She was an amazing support and i couldn't thank her enough. She gave me a sense of hope and comfort. She was also a shoulder to cry on. Along with that an amazing resource. I have met amazing people and owe alot to Mary and the foundation. I have made great friendships through this foundation and will be forever grateful
Mary is absolutely amazing in all that she does for TTTS awareness and in helping families during their most trying times. From encouraging words to bereavement services, she goes above and beyond for everyone who reaches out to the foundation. I honestly don't know how I would have made it through my TTTS pregnancy without this foundation's support and guidance.
The TTTS Foundation has been a cornerstone in the life of my family and so many others. When my twin sister, Ryanna, passed away unexpectedly due to TTTS, the foundation provided my parents with crucial education and support. Throughout my childhood and young adulthood, I have been inspired by the foundation's endurance, empathy, and activism. This is an organization whose mission was born from the heart, that operates out of passion, and lives to serve. Through its tireless work, the TTTS Foundation hopes to stop TTTS and I will always support that.
Let me start by saying how grateful I'm with Mary and this wonderful organization. I started doing some research about twin to twin transfusion syndrome right after my OBGYN confirm the identical twin pregnancy. My Doctor of 6 years was not so pleased with the news, she said it was going to be a really bumpy pregnancy, that she did not expected me to do well, she mentioned the possible complications such as twin to twin transfussion syndrome. I decided to do some research on my own when I found the wonderful website that the foundation had created, later I decided to call Mary. At first, I was expecting to just leave a message and receive a call back days later; to my surprise Mary answered the phone right away, at the time I was very sad, I was crying. This was our first pregnancy and was confused and very sad for the babies. She was so wonderful and hopeful, she gave me encouragement, her calming voice was just what I needed to hear at that moment, she made me feel that there was hope for our babies. She has been there for us. She is available when we need her the most. Her website organization is full of important information. I just cant say enough about what a blessing she has been in my life and my families. I love her organization. I feel she really answered Gods calling when she decided to create this foundation. Unfortunately, our baby girls died, and we are devastated right now. Mary is been a wonderful support through all of our nightmare.
I completely recommend her organization, from the bottom of my heart. In this day and age is hard to find good, loving people. Sometimes its is amazing to come across someone that can be like family to a complete stranger. That is how Mary treats people. GOD BLESS YOU MARY! I will be creating a video shortly.
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!
Every single year this foundation raises awareness about TTTS at the Twins Days Festival. In 2014, My Twin and I were the princesses at the festival and got the privilege to help out at the booth. I loved helping reach out to others and give them information on TTTS. As well as talking to families that have gone threw it. My Twin and I are survivors of TTTs and knowing this organization is in place will only make the world of Twins a better place.
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 a wonderful organization. They help so many people with the information that they send out. I am doing my gold award project for Girl Scouts making packages that the Foundation send out to people. The packages will have things to help the families but also stuff for the twins. I am so great full that I have got to work with Mary, she is most kind person I have ever met.
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!
Mary, and the TTTS Foundation, held our hands as first time parents to expectant twin girls who were gravely ill from the effects of TTTS beginning at 19 weeks gestation. The TTTS Foundation spent countless hours and guidance to help us make the best choices and provide us with knowledge of how and who to seek to help our girls. Sadly at 24 weeks gestation, our recipient baby died from complications of TTTS. Both girls were delivered at 27 weeks gestation, with our survivor sustaining multiple brain injuries due to blood clots passed from her twin sister. There are no adequate words to express the grief we had as parents loosing a baby, and on top of that loss, grieving the loss of a "normal" child. The TTTS Foundation has been a HUGE part of our lives as parents from the very day TTTS was diagnosed to this day nearly 22 years later. Knowing that we had the knowledge, love, and dedication to our girls from the TTTS Foundation has helped us have a sense of peace and acceptance of the outcome of our twins because we knew we were informed and did all we could for our girls. Without the TTTS Foundation, and Mary Slaman the President and Founder, I don't think we could have been able to cope as well as we have through the many physical challenges our survivor has faced. We are forever grateful to this nonprofit organization and all the compassion it encompasses from the beginning to diagnosis, to the pray team, the support we received from death of a baby, and onto the support we have gained from the special needs support system with our daughter. The TTTS Foundation does not stop helping those to delivery, it is a life time support of hope, guidance, and encouragement.
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.
My twin boys are TTTS survivors born at 30 wks 5 days. I had laser surgery at 18 wks gestation at stage 4. Lawsyn & Landyce are my living miracles, & I'm so grateful to have them with me today. The TTTS Foundation is such a great cause, & the founder, Mary Slaman has been such a huge blessing to so many families such as mine. I didn't find the Foundation till after my ordeal, however, I have seen so many others get the help & support they needed from Mary & her Foundation. She gives hope & relief to all the TTTS families, & there isn't anything the Foundation won't do in order to help save your pregnancy, or to even help you grieve. Mary has been through it herself, & because of her graciousness, many others are able to have a chance. I like to give back to the Foundation whenever I can, & to help others just as her. The TTTS Foundation needs all the support it can get due to the rarity of the cause, but with the mortality rate as high as it is with this disease, it's just as important.
My husband and I are new parents to healthy twin boys thanks to the twin to twin transfusion syndrome foundation. We received a plethora of information and resources that helped us choose the best options for our family. TTTS foundation helped us get to the best doctors. I don't know what we would've done without them.
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)
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!
The foundation was more than helpful! Without this foundation we don't know if we would have our baby girls with us today! I will never be able to thank you enough!
When I first found out I had either TTTS or SIUGR, I searched the Internet frantically for information. I was lucky enough to find the Twin to Twin Transfusion Syndrome Foundation's Website. I called the number and left a message. I thought a volunteer or representative would call me back, but Mary, the founder, called me back herself. She was an amazing support throughout my entire pregnancy. She also helped put me in touch with Dr. Julian De Lia, who is an amazing man and doctor. He is the doctor that invented the laser surgery that is used to treat TTTS.
Anytime I had questions or was upset, Mary was there to support me and my babies. She always lifted me up when I felt hopeless.
She is a wonderful, caring person, and I would highly recommend this organization. She played a great part in saving my twins' lives.
We were given no hope, told to terminate one baby in order to save his brother. We found the TTTS Foundation online and made an immedidiate phone call and spoke with Mary. Mary gave us hope, helped us find a doctor who would do his best to save both our babies and guided us through the rest of our pregnancy. We delivered 2 healthy babies, all because this woman wouldn't give up on us! Mary has devoted her life to saving babies and deserves so much more credit and money that she gets! She is always putting others first!
The Foundation is an outstanding organization. I have always worked in the non-profit sector and I have never seen an organization so clearly focus and work toward their mission. I am also impressed by the multitude of people that receive personal care from this small organization. When we were going through TTTS the Foundation was our only hope. My twins would not be here today if it wasn't for the support, information and the work of the Foundation. I was a client served, I have volunteered and have given money to this organization. I will continue to volunteer and donate to this organization so that families and doctors can get the support and information they need to fight this disease.
I went through ttts with no one to turn to. So wish id come accross the foundation at the time. The help and guidance given helps so many through unbelievably hard times. A lady dedicated to helping others.
When my daughter called and said the twins had TTTS and that they had to go to Florida "like yesterday", I was online and found TTTS Foundation read some of the information then called Mary. I asked if this was a Christian based organization, she said "yes". I explained our situation and she gave me the doctor's name and phone number in WI. Mary answered the phone when I made the first call, she put me at ease about our options and gave us information. I called the doctor and he answered the phone. I put my daughter on the phone with him. I believe God has placed Mary on earth for the purpose of helping others with the same dilemma. I was impressed that God directed me to her organization via the web and the help that saved our 2 1/2 year old grandsons that are so smart.
My daughter was diag with ttts at 19 weeks, since then she has has two amino reductions as the laser treatment failed because of a bleed, at now 26 weeks she is stable, but without the help of this organisation, I am not sure were we would be, as the general info on the net paints a very black picture. This group gave us hope, consideration and most of all support..... thank you.. no matter what the outcome, you were there when needed.
When I was told about TTTS I knew nothing and read stuff on the internet that made me crazy, then I got in contact w/ Mary right before they were born and the support is amazing now. I was told to cut blood off to my donor but they found away to do the laser surgery and I have 2 1/2 year old Miracles!!! This Group is more then just information it's a FAMILY!!!
Whenever you get devastating news from your doctor a lot of the information they give you afterwards kind of goes right over your head as you wonder why/how this is happeing to us. We found out about TTTS at 21 weeks and the doctors were preparing us that we may lose one or both of our babies. We obviously wanted to do anything and everything for our babies. The TTTS foundation website helped us get more information on exactly what was going on and gave us great support. It also helped relay to friends and family exactly what we were giong through as we couldn't explain everything.
I just want to thank everyone at the foundation for sharing their experiences ...helping us educate ourselves ...and paying for our sons and our family. Shawn and Kathleen Mauck. Baltimore Maryland
excellent, informative , and very very caring , personally they have helped me through the toughest times in my life , so so grateful for its founder mary , she works tirelessly to help others through there TTTS journey .... thankyou so much for just caring
The TTTS Foundation has help countless families and in so many ways by the experience and research that has been done non stop for well over 20+ years now. Any less experience would NOT have been able to save our babies lives and I am forever greatful and supportive of everything that this foundation has done and continues to do despite the slander that others put forth to hurt people in such shameful ways. I was told of laws and rights my child had that hospitals had to provide to her that they were not providing as fast and as we needed them to. I was told of methods that improved my daughters condition that are not told to most moms by their doctors, I was told of so many empowering ways that helped our fight against TTTS and without having this type of experience from a founder who was there to advocate for BOTH of our babies, our outcome would have been very different. This Foundation Does NOT just pass on to you what some doctor may say to have your business sent to their Fetal Center or Dr. Office. ..THIS IS THE ONE PLACE that will call your doctor for you and tell them they are not giving you the best or sometimes even the correct advice at all for your specific case. The TTTS Foundation Advocates for your babies to LIVE no matter who your doctors are and this determination and love for our babies to have the best chance possible to fight and make it , is what saved their life. I have never known any organization to be as this foundation is. I am very thankful this Foundation doesnt allow just anyone to be a part and say whatever advice they want to people. My granddaughters would not be here today if I had taken advice I have seen in other places since our ttts case has ended. I thank God for the work He has done thru this Place and I thank the founder for having the kind of heart Gods hands can do His work thru. We are forever greatful.
My wife and I lost our twins. The kindness of those at the foundation got us through some hard times. God bless the work they do. It was nice to feel not alone.
My boys were diagnosed with TTTS in April 2011. I was sent to Cincinnati for laser surgery to save their lives. I found the TTTS foundation through a google search and found the website very informative. I reached out to the foundation through the Facebook page where I found more support. The founder have dedicated her life to helping other people going through the same kind of pregnant she went through. I attended a conference in Cleveland Ohio in July 2012 and it was very inspiring to meet other people who had walked the same journey as me and who's lives had been touched by the foundation. I am still very involved with the foundation and I will always do what I can to help the foundation spread awareness and help other families. There are many babies who are alive today because of the help and information provided by the TTTS Foundation.
This is a great amazing wonderful caring loving Foundation. I suggest to everyone who is faced with TTTS, to please contact TTTS Foundation. Get as much information on TTTS as you can so you can decide what is your best way to treat it..There are options. There is help. There is hope..
The TTTS Foundation has helped my family so much. I can never Thank Mary and the Foundation enough. Without the info and all the talks and the other ways that the foundation has helped me get to where i needed to go for treatment, I may have lost both of my twins. I am so thankful for the Foundation.
Unfortunately, TTTS takes lives. There is no foundation that can save every baby, not even one that has the steller, long-time record of the Twin to Twin Transfusion Foundation. Please understand that when babies are lost, there is bitterness. There must be a target. Unfortunately, we are seeing that in some of these reviews. They are unfair and not based in reality. The TTTS Foundation has a long-standing record of fiscal responsibility. There has never been any wrongdoing, and any hints to this are completely off base. My family was helped in a huge way by this foundation, and it made a difference. Without it, we would not have added twins to our family.
The Twin to Twin Transfusion Foundation is a wonderful organization committed to fighting this disease. The woman who runs the Foundation has dedicated her life to spreading awareness and has selflessly helped countless families. Without her work, there would be many more babies dying from this disease. Sadly, there will always be angry and bitter people looking to place the blame for their situation on someone so this Foundation sometimes becomes the scapegoat. The TTTS Foundation may not be able to reach every doctor in the world but they are certainly trying to and have come a long way. I have, and will continue to support them and donate to them. In addition, I continue to raise money for the Foundation so they can continue the great work that is being done and has been done over the last 2 decades.
I was diagnosed with TTTS in 2010, I called the TTTS Foundatino and requested the inforamtion packet and it was at my door in 2 days! The compassion that this Foundation and its owner has is the most amazing thing I have seen. The Foundation works with many families all over the world day and night, all hours of the day! This is the owners life's conviction and she is doing an amazing job. The tax documents show nothing but support and love to others, as this is the sold purpose of the President/owner of this foundations LIFE! I couldn't be more happy with this Foundation and will continue to volunteer as the Awareness Coordinator and Conference Commitee member. If it wasnt for the knowledge and commpassion that this Foundation has, I would have never know what TTTS was. Thank you so much for you help and much love to you!!
My younger sisters were diagnosed with TTTS. Throughout most of their lives, they did not realize how much this disease affected children everywhere. They attended a national conference with the doctor that performed their surgery so many years ago. The attitude my sisters had regarding this syndrome and its victims when they returned was inspiring. After that brief exposure to this foundation and with their help, my sisters have since started to reach out to other survivors. Without them, my sisters would not be the wonderful women they are today.
I do graphic work for the TTTS Foundation from time to time as a volunteer. I owe the TTTS Foundation so much for all they did for me. I was suspected TTTS from 8weeks on but did not "get" TTTS until 3 days before I had to deliver at 28weeks. At 16weeks I was sent to a local "specialist" for TTTS. All that to say that I knew NOTHING about TTTS - it was just letters to me - until I reached out to Mary at the Foundation who promptly replied and gave me a TON of information on boost and bedrest as well as what questions to ask my Dr and what to be looking for and aware of. Had I not known that informaiton I would have been blind throughout. Mary played a key roll in supporting, as my husband was deployed during my pregnancy. Also she gave me contact info bywhich I was able to reachout to Dr DeLia who called me back from his own vacation to give me information and talk with me about my concerns. After my girls were born and home from the NICU I made myself available to the TTTS Foundation however needed as my way of "giving back" to them for all they did for me. At that time I became more and more aware of what all they do and even more-so loved and appreciated all they do!
Without this organization I would not have my 17 year old girls. I was diagnosed in June of 1995 with TTTS and was put in touch with Mary. Not only did she put me and my husband at ease, but she put us in touch with Dr. DeLia. Without the foundation I would not have been put in touch with anyone and would have lost my girls. They were a severe case and would not have made it to term. Mary wasn't some cold person on the other end that had no idea what I was going through, she too had experienced TTTS. That was important to me. It was important that someone who was telling me there was hope, knew personally what my fears were. I cannot speak highly enough about the foundation and what it means to me. I was blessed with being able to see Mary again this summer (2012). She is the same Mary she was years ago. Also, the foundation back then was able to assist with the cost of the surgery. They covered what my insurance did not. They put my husband up in a near by hotel. I know that since so many more people know of the options out there now, it is not possible to do that.
I think the TTTS Foundation is a wonderful organization - Mary made me feel so much better about my situation during an exceptionally hard time. I needed to be put in contact with Doctors who gave me medical information and advice.
My wife was told the pregnancy was at risk for TTTS early in the pregnancy. We were terrified. We looked up a lot of information online and found no solice. Until a friend put us in contact with the TTTS Foundation. We had replies from the foundation and supporting Dr's within minutes of our messaged. phone calls/ emails/ messages. They were quick at reply and gave us valueable information that we used and changed what we were doing to ensure that we were doing all we could to increase survival rates. I am not one to get involved with these type of posts because I feel they are typically done to hurt not help. But this one I could not leave unspoken. The TTTS Foundaiton is an amazing organization that does all they can to help and educate and they will always recieve my highest praise for all they do.
The TTTS Foundation played a large role in saving my babies lives. When I was put in contact with them I knew NOTHING about TTTS other then the deadly statistics. The TTTS Foundation put me in contact with individuals and Dr's who were there to support and gave me GREAT advice and information on what to look for and do to better increase the chacnes that my babies would live. I full support the TTTS Foundation and all they do for families. They serve TTTS families as well as spread awareness at every turn. They send out COUNTLESS books/ and information to Dr's offices and individuals to educate on TTTS. I would in a heartbeat recommend anyone facing TTTS contact the TTTS Foundation if they want someone to help them and be their advocate and give them appropriate / necessary information!
In 1996, my twins were diagnosed with Twin to Twin Transfusion Syndrome. Thankfully, my doctor gave me the phone number of the TTTS Foundation. With the founder's help, I was able to travel out of state via airplane, my husband stayed in a reduced-rate hotel for a week, and best of all.....both of my twins survived and are now healthy, happy 16 year olds. This is unfortunately not always the case. TTTS is a disease that never presents the same way from pregnancy to pregnancy, and it moves quickly. The founder of this organization uses funds to assist patients in many different ways. She is kind and knowledgable and is quick to respond to a parent in need. I would not hesitate to support this organization in any way.
This organization does spread awareness. It provides information and support down to an individual level about TTTS. It helped our family through early detection, and provided support through the last and toughest part of our pregnancy. They gave us the material to advocate for ourselves and inform ourselves. I have unfortunately noticed other pretentious organizations/individuals slandering through various social media venues which is a shame, as this group has formed numerous bonds with families, Doctors and Hospitals. The awareness conference was a great bonding experience for families to gather together for a single purpose and was an awareness weekend. The Foundation has been in existence for 23 years and does not receive funding for all fetal syndromes, only TTTS.
This foundation could be so great. The woman running it has truly great intentions. But in 23 years, she has tried to do it all. Many people want to help and volunteer, and she turns them down. Unless they give a hefty sum. They only give back to the families $0.03 for every dollar donated. She has not brought awareness to TTTS. Many doctors still don't even know what it is or what to look for. Find a support group on facebook to give money to the families directly. Please don't feed this middle man.