Every Twin to Twin Mom's Journey

Arlanna - posted on 11/14/2009 ( 11 moms have responded )

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Good Evening Mom's, I hope this finds everyone doing well. I check this page occasionally to see if anyone new has joined or what other people have for stories, because with this rare syndrome I continuly wonder how many of us there are out in the world. Everyone of us has a different story, a different beginning, a different middle and certainly a different ending. I wonder if any of you feel as if I do, that feeling of what the future holds for our twins that started fighing for life even before they were born. My Twins will be three on the 24th. And for the first time I have stopped reliving every day from the moment I found out I was having twins at 19 weeks to the day I had my recipient James baptised at 3 hrs old. Although I always question what will they be like when...How will the damage to them effect them as a teenage playing football. I feel like the oly stories on the internet are before the advanced treatments came out. There should be a book about our stories so those that come after us know all the angles, not just the saddest. Does anyone have a story to share !

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ERIN - posted on 06/13/2013

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I did publish a book on it. Forever Linked A Mother's Journey Through Twin to Twim Transfusion Syndrome

Shannon - posted on 05/13/2011

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Hi everyone! My name is Shannon and here is my story:


I found out we were having twins in the beginning of Sept 2010. We found out they were identical girls a month later. That gave me the proudest feeling in the whole world. I was carrying identical girls! In the very beginning of November we found out they had Twin to Twin Transfusion Syndrome, I was 17 weeks along in my pregnancy. I was told to go on bedrest right away. I saw all the best doctors. My ob/gyn sent me to a perinatologist when we first saw they were twins and my perinatologist works with Dr. Julian De Lia (a pioneer for placenta laser surgery and other TTTS research). My ultrasound tech had the best eyesight of anyone I ever met and saw the smallest fluid difference in my babies. The difference was so small you had to squint to barely see what she was talking about. That made me feel like it could be a mistake. But right away she told the perinatologist what she saw who then contacted Dr. De Lia. I got a phone call from him the very next day and we talked for a good 45minutes about what was happening to my babies. He was very good at explaining everything so I could understand him. From that day forward I had an in depth ultrasound (with 3d technology) every single week. At 19 weeks Dr. De Lia felt I was ready for fetoscopic surgery and the most nervous feelings came over me. The statistics were not that great and I was worried that I was spending my last bonding moments with both my daughters alive together. I worried that I would lose one or gosh both! I could not sleep, and I never worried about my own pain. I also never worried about complications during surgery. I was given the most hospitable experience by Dr. De Lia who put my IV in hisself and spent the entire morning in my room explaining to me every detail of what was going to happen in surgery. I did not have a clue what I was in for but no one could have convinced me to back out. I ended up having the rarest complication you can have. The one and only complication that would result in not being able to ablate the babies’ vessels. An artery was hit by the scope when entering my uterus and bled so much into the amniotic fluid that you could not see the placenta. They tried to exchange it with saline but could not clear it enough. They showed me a sample and the fluid was almost black. My babies were swimming in that for the next two weeks. I spent an excruciating week in the hospital, being extremely depressed and being told I would not have another chance at surgery. Then when I went into my next appointment I got the best news ever! The blood clot that formed in there was gone! It was expected to take 4-5 weeks but it was gone in 1! So I was admitted again for a second go at fetoscopic surgery. I went through the same routine, this time by myself because my fiancé could not be off work the second time. I had the SAME complication! Can you believe that? I went down in history of the only person at that hospital having the rarest complication twice! Things were just not working out! I woke up from general anesthesia and I could not breathe. I gasped and winced out “help me” but my oxygen stayed low and by carbon dioxide was climbing. I was suffocating. The respiratory therapist put me on an amazing mask called CPAP and after passing out I woke up breathing. I was not breathing well but I was breathing. My first thought was not about how I almost died. It was about… are my babies okay? I went back to my room and I eventually got my hopes up thinking about how I was only one week away from steroid shots to help my babies lungs. Dr. De Lia came into my room to explain to me how I needed a blood transfusion because I lost a lot of blood during surgery and not more than 5minutes after he left the room I started bleeding and I hit the nurses button. I started panicking and they rushed the ultrasound in my room. That’s when I had to face the dreaded line, “Im sorry there are NO heartbeats” I don’t think I’ve cried harder in my life. We did everything we could, but could not save them. I spent 4 days of inducing labor and delivered them vaginally (it took 3 hours of pushing and 12 hours total of full blown labor) I held them, I appreciated the beauty in their features, I made foot and hand castings. We were saying our goodbyes to our daughters. I love them and miss them everyday. ~Shannon

Amanda - posted on 10/07/2010

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Hi found out that i was having twins in october 2008 (IWK Hospital) we just found out then that they were identical didn't know what sex they were and that i would soon be put off of work in Dec i went of work in November 1st due to back pain and was seen by the IWk every 2nd week and my home hospital in Ch-town every other week we found out we were having girls in December at the Iwk which was very exciting I had a little boy so i really wanted girls near the end of Januray 26 weeks in to my pregancy i was a a ultra sound in ch-town and they told me to go see my doctor who was at the hospital he told me that i had to go to IWK in halifax that one of the babies had to much fluid didn't know what was going so we drove to the IWk were they did a drainage where they was 2 litres of fluid of of one of the babies i had 4 of them within 3 1/2 weeks and then on Feb 15, 2009 my little girl Reese decide that she wanted to be born first and feet were coming well i was 4 centimetres diltate with her feet so they did a c-section they were in the hospital until close to there due date april 24 due date was the 29 and they were born 10 weeks early weighing 3lbs 4oz (ryleigh) and 3lbs 2oz (Reese)they are now 19 months and walking and are so healthy they are my miracle babies with out the IWK i proably wouldn't have born or none of my girls today!!

Amanda - posted on 09/26/2010

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Hi, I'm new to this group and thought I would share my story.
Our little boy was almost two years old when we found out we were expecting again. The pregnancy went along pretty normal though I felt a little more ill and tired than I had with my son. All of my appointments were fine, blood work was fine, everything seemed normal.
At 19wks I had my routine ultrasound (they normally only do 1 here) and found out that not only were we having twins (HUGE SHOCK) but they had TTTS. We were given the options of amnioreduction in our home hospital (which is a large children's hospital) or laser ablation in Toronto, with the only specialist in Canada to perform the procedure. There was no hesitation, we were on a plane within a few hours and met with our miracle worker that night.
Two days later I had the procedure, then two days after that we flew home. Things went well from there, I had ultrasounds weekly and had just been knocked down to every second week when I had pPROM at 23wks. I was admitted to the hospital and told that my girls would have less than a 50% chance of survival and would most likely be born within the next 24-48hrs.
But my girls were fighters and they kept hanging on. I had ultrasounds 2-3 times a week, doppler monitoring multiple times a day, and once things progressed further NSTs twice a day. They still kept holding on.
Finally my girls were born at 31wks2days. Mairin weighed 3lbs1oz and Keira weighed 2lbs6oz. They spent 6-7wks in the NICU (Mairin came home first) and were never intubated, only CPAP for one day.
Now they are 16mths old (14 corrected) and are doing really well. Mairin has no sight in one eye - she had a corneal graft, a lensectomy, and cycloablation, the best we can hope for is that she keeps the eye. We are being followed by SO many doctors and departments that it makes my head spin but they are happy, they are healthy, and they are here - more than we ever could have hoped for.

Katie - posted on 06/01/2010

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:) i have my own miracle maker at my house thomas was a little over 1 lb when he was born his brother william was 2.5 lbs thomas went through ALOT from heart issues to blood kidney lung liver 4 broken bones and 2 staph infections and bacterial meningitis thomas stayed in the nicu for 5 months william came home after 1 month in the hospital he weighed 5 lbs 5 oz when they discharged him thomas is now home with us FINALLY and now he weighs 15lbs still on oxygen and meds but ill take that any day :) (willliam weighs 20lbs now )

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Kristy - posted on 09/06/2013

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Hi my name is Kristy. I also have twin daughters who are now 17 who were born with twin to twin transfusion syndrom at32 weeks. It wasn't until about 28 weeks when I started having a bit premature labor or Brackston Hicks I was worried and we went to the hospital and Put on bedrest. Close to 30 weeks they put me and the hospital to stay there until I delivered my daughters my daughters were born on February 15, 1996 February 14 the day before which was Valentine's Day my husband and I left the hospital for a few hours to go out for dinner when we got Back to the hospital they did a routine check and could only hear one heartbeat the next day I went for an ultrasound. The technician told the orderly who brought me down to wait because it would only take a couple of minutes to read both heartbeats. After laying on the table for almost 10 minutes with my fists clenched she stopped and put everything away and wiped off my stomach I was scared to ask but I said is everything okay and she said I'm sorry sweetie you lost one of them. The ride back up to the floor where my room was where my mom was waiting seems like the longest ride of my life the whole time all I could say was no no no when I got to the fourth floor I ran out of the elevator and out of my wheelchair into my room crying to my mom saying this can't be happening. I told her that one of the girls was already gone and when the nurses ran in I said I needed 10 minutes just to process and then they told me that I was probably going to lose the other twin as well all of a sudden it was like an episode of ER with Doctors and nurses running and putting IVs and a cathader in and rushing me down to the operating room. they told me because I had just eaten lunch I couldn't go under general anesthetic for my cesarean section but I told them I couldn't be awake for this and I would sign anything I had to just to not be awake so I signed forms and just waited to escape the reality that I was thrown into. At this point my mom had called my husband And he arrived at the hospital just as I was going into surgery. When I woke up I remember reaching down to my stomach and asking my mom and my husband are they still inside of me they said no its fine and I drifted off again. When I came out surgery they wheeled me into this room where my one daughter who was being rushed to sick kids hospital was being kept under a red heat light with tubes and an iv along sith a nreathing tube so that i was able to say goodbye to her Since they didn't think she would make it she was the twin that took and all the fluid she had fluid in her stomach and and her lungs and was so swollen that they were sure she had Down syndrome. The next time I woke up the nurse came into my room saying that my one daughter the one that they thought had died the smaller twin who had all of the nutrients taken from her who was only 2 1/2 pounds was alive and in an incubator in the neonatal ward. No one could explain how they both survived the doctor didn't come and see me for three days because they didn't know what to tell me all the nurses said when they took out the first when who they thought was the one who had tired came out they were all cheering then the second twin came out alive too and everyone started to cry because no one could explain how it happened. The reason they said the first twin had died was because the tech watched her heart on the ultrasound for almost 5 min and it didn't beat once. My girls are now 17. There was no Down syndrome luckily, but they do have mild intellectual disability and ADHD, but I'm fine with that they are my perfect angels who are the most loving, caring, sweetest kids you'd ever meet. They're just a few years behind. I'd love to hear if anyone has any similar stories. Good luck to all of us moms out there! :)

Jodie - posted on 09/26/2011

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My twins had twin to twin transfusion syndrome they were born at 26 weeks and i lost one of them at 2 weeks old my other twin is 7 years old now he has trouble seeing and hearing he also has lung disease they were identical twin boys.....

Arlanna - posted on 06/10/2010

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aww katie, that's really great. 15 and 20 lbs at their age!!You should be so happy. My James is only 31 lbs at 3 1/2 yr's old. He still struggles. I relate every issue he has to ttts. I'm glad they are well!!

Michelle - posted on 03/02/2010

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Boy do I ever. I first found out I was having twins at my intial ultra sound (about 9 wks), I used to know that date but as we all well know, insignificant information is replaced by more important information, so on and so forth. I was on bed rest with placental preprevia by my 11th week. I had my typical testing @ 11 wks for a high risk pregnancy ( i delivered my 1st child @ 35 and a 11 months later preg with these twins thern i think the next tests r @ 15wks?. The first info we got was from my ob's ofc that my numbers were off (possibly downs) i spoke then to the perinatologist's ofc and the doctor was so alarmed he wanted me there as soon as I could get there. He examined me and then sat us down for the long talk about TTTS. Talk about devastating, right?! So I called my best friend (I lived in Agoura Hills, CA and she in Hawaii) we spent the next 6 hours on the phone researching sometimes the same things, other times each would venture off and have the other go look at what we had found. All this happened at 17 wks gestation, which as u know now is very early and the prognosis for us was not good. We found the Twin to Twin Transfusion Syndrome Fondation and from that orginization, an additional wealth of knowledge and leads. I was under the care of the "Pioneer" of Laser ablasion via long distance phone calls. We interviewed every office and specialist's asst we could reach. In the end it was my own perinatologist that saws us thru the entire process. He did 2 amnionic reductions and a septostomy, watched me like a hawk and when my water broke @ 28+5 wks, he tracked me along with my ob. My ob left me 10:30 am on Wed (my water had broken @ 5am that previous Sunday) I made my peri come to my bedside that Wed afternoon (wow maybe it was tues. i say wow cuz I can't believe i'm not certain of the day). So anyway he came over, checked me, we talked about it, my strep came back pos, i seemed to be having a slight reaction to one of the iv's, blah blah. HE DOES NOT DELIVER BABIES!!! I begged him, please, other doc is gone, u said u wanted to b part of the birth of these girls, here's ur chance.

He winked at me just as they pulled the sheet up to start cutting, letting me know i was in his hands and today I have these amazing beautiful strong smart....precious twin baby girls. And I was originally given an 85% chance of coming out with only one baby (not even taking into account the morbidity factors) Yes I had the most brillant, God given, hands of grace upon the lives of my unborn children and there is NO WAY for me to express the graditude, love and emotion I have for that man!

Our respite care provider, now part of our family and lovingly called Grammy and Mom, for their first birthday gave our family a certificate acknowledging their birthday of course, our 2 1/2 yr old as "big sister day" and for mom and dad, Happy we know they're gonna make it day and we can breathe again (so on and forth) and we now celebrate our children's birthdays with that in mind.

WOW to finally express that to someone that actually has a real chance at "getting it" is somehow liberating. It also leads me to the thought that there are still some real big thank you's I've yet to deliver. People in "our circle" that have been there and talked to us for hours as total strangers but knew that was their give back. I need to be listed as one of those people because they were a very intricate part of that brick work it took to get those babies in my arms. THANKS TO ALL OF YOU READING THIS AND ALLOWING ME A FORUM TO EXPRESS AND RELEASE IN A WAY THAT I HAVE YET BEEN ABLE TO DO FOR THE PAST 3 VERY LONG YEARS!!! I don't know about u other moms, but this thing sent me for a tailspin that i could have never foreseen and am still recovering from today, thanks to meds and a very select few people. Sometimes our strongest family ties don't come from blood shared DNA but just blood and tears shed. Thank you to those folks as well, I hope u know who u are!!!



And PS to those of you starting out in this journey, never give up hope because the stories vary, please focus on the victories! There are many of us that have amazing victorious successes to share. My children are beyond anything we could have imagined, healthy, and strong. Our delays mild in comparison to what so many parents go thru not only with our affliction, but many others. And for those of "us" that have had to endure the struggles to move beyond sadness, sorrow and loss; our hearts, tears, love and future joy are yours to be shared.

Kristen - posted on 12/22/2009

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Hi, my names Kristen and my boys had TTTS.

We found out we were having twins at 10 weeks and i was shocked and Happy at the same time. i think the best thing was watching peoples faces as we told them theres 2!
Mum went out and bought me a book on twins which i found to be my saviour throughout the turn of events that were to come.

At my 19 week ultrasound, there were so many doctors looking at me and none of them said a word! they had a another doctor come to speak to me. "you have twin to twin""your babies will be born before 32 weeks so we have to send you to a different hospital". and thats pretty much all the doctor said to us. He made a phone call and sent us to a specialist at westmead the next day. The specialist at westmead was much more knowledgeable on twin to twin and i felt a sense of calm and that everything would be ok after speaking with him. He also sent me to another specialist the next day at Royal womens hospital where all our options were discussed. He showed me the lazer durgery video, yet pretty much told us to abort the pregnancy. But, my hubby and i didnt even have to discuss it, we will do what we can to save both.

From then on my primary care was at westmead hospital, i had ultrasounds every few days until i was 27 weeks and thats when i was admitted to hospital. Oh how i hated being on those trace machines everyday! I had been taken down to NICU and spoke with other parents who had bubs in there, its a scary site with all the machines and alarms going off every few minuets. The nurses there were very nice a supportive. Our twin to twin never got that bad for anything to be done about it, but at 30.4 weeks my littlest had stopped growing so i was started on Steriods to help mature their lungs quicker and at 31.1 weeks it was off to theatre for an emergancy c-section. and how lucky i was that two places in NICU were available!

There were so many people in the thearter! a team each for the bubs and a team for me.
Max was born at 12:07pm 29.8.2005 weighing 1.6kg (3 pound 3) and Riley was born at 12:08 weigh only 876 Grams (1 pound 9) I remember hearing them crying and it felt like forever for somone to tell me if they were boys or girls! My poor hubby didnt know wether to saty with me or go with our boys! I told him to go with the boys and i would see him there in a little bit. When i finally came out of recovery they wheeled me in my bed right into NICU so i could see our babies, they didnt let my hubby or my mother into see them beofre i got there. Gosh they were so little, both had to ventilated, both had needles coming out of them, both had jaundice. There apgars were really good though, Max scored a 9 and Riley scored an 8. It was a very emotional expreience in NICU i think i cried for the first week and i certainly got the 3 day baby blues. I remember sitting with max on one side of the room, and watching Rileys heart beat drop below 20! all the nurse had to do was tickle his feet to remind him to breath! Yet i still felt calm that everything would be fine. They both had multiple infections in NICU and it was very few and far between cuddles. I think everyone else in our families were more concerned than what we were,

Max came home after 5 weeks, he was so strong and Riley the sicker of the two still had problems with his lungs, It was hard having one at home and the other in hospital yet we still made it into hospital to see Riley twice a day. Riley had to have a blood transfusion while he was in special care, he was aneamic but he ended up coming home on his due date and he came home on oxygen. That was an interesting experience! But now, our boys are happy and healthy, and unless i told you, you wouldnt know that they were premie and had TTTS, We are so blessed that we have them. Max is a solid little unit and Riley only has to have one more check up with the lung specialist before he starts school. They are just a little bit behind most 4 year olds however ,you show them a car and they can tell you what brand it is! its funny.

I hope my story gives some hope to other parents out there that have just found out that they have twin to twin. I know its hard and not all stories end up being happy, but stay positive, do what you need to do, and know that everything happens for a reason.

Tracy - posted on 11/15/2009

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Good evening Mom's, I would like to share our story with you. I am a Mother to 5 wonderful boys Kyle(11), Daniel(8), Logan(5) and the youngest 2 being my TTTS miracles. Adam (recipiant) and Jayson are 3 1/2 years old now and doing remarkable. I found out at 9 weeks that I was pregnant with twins and then at 13 weeks I thought my world was about to fall apart. That is when I found out about this disease called twin to twin transfusion syndrome. My OBGYN did an ultrasound because of being pregnant with twins and they couldn't find the membrane that should be seperating them so from there he sent me to a Maternal Fetal Specialist for a better ultrasound. I remember vividly being scared to death because he kept looking and looking but couldn't find the seperation. Then he took us into his office and that's when we heard those words "your twins have twin to twin transfusion syndrome." Of course I had no clue what that meant until he started explaining and needless to say I was a wreck. That doctor left us with no hope of coming out of the pregnancy with either baby. He wanted to send us to Philadelphia for the remander of my pregnancy to a doctor there to get the amnio-reduction to see if that would help. I wanted to do what was best for these babies but I also had 3 other children at home to think about. So that night my husband and I went home and he did some research online and found our saviour! Dr. Julian DeLia, practically in our backyard in Milwaukee WI. We live in Northern IL.Anyway my husband called him that night and left a message and an hour later our phone rang and it was him. He talked to both my husband and I for about an hour and the next morning we were on our way to meet the man who saved my babies lives. They did yet another ultrasound there and determined that we were a candidate for surgery. They would go in with laser and do their best to seperate the vessels that were being shared. I was not gauranteed to come out of this surgery with both babies but my heart and God told me everything would be ok. So we went home and explained to our families and our boys what we had decided and 2 days later we were back in Milwaukee to have the surgery. The surgery went well and both babies,boys again I found out, had survived! Alls well that ends well right? WRONG, it wasn't over. After being in the hospital for a week prior to surgery I got to go home and was on strict bedrest, only able to get out of bed for bathroom breaks! I was also instructed to drink protein drinks 3x a day for the remander of my pregancy in order to give my boys all the help I could. So it begins, in the beginning all was well but then one day at 20 weeks, I rolled over and felt a pop. That's right Adam's water broke. I spent the night in the hospital thinking this was it but of course at 20 weeks they were expected to survive if they delivered so the next day I was given the option of continuing the pregnancy or terminating. Well termination was not an option for me so we went home and back to bed I went except for my weekly visits to the doctor to check the fluid status on the boys. A couple more weeks passed and one day while going to the bathroom I realized I was bleeding. Week 23 a placental abruption. Again my options were termination or plug along because "they are not a viable pregnancy until 24 weeks, so if you plan to continue the pregnancy we will plan on admitting you the day you are 24 weeks and you will remain hospitalized until you deliver the babies" So we went home for 4 days and at 24 weeks was admitted. Everyday I had a nurse next to me watching t.v. with me 3x a day with the monitors on my belly to check heartrates and make sure there were not contractions going on. This went on until week 26. It was a Sat. morning and time for my daily routine to start, this one was a bit different though. There they were the dreaded contractions and this time they weren't sparse, they were there to stay. So off for the emergency c-section we went. Scared to death my husband and family wouldn't make it there in time. We lived an hour from the hospital. He made it just as they were getting ready to start. At 1:35 P.M. Adam was delivered and at 1:36 P.M. Jayson was. Adam weighed in at 2lbs 5oz, 11 3/4 inches long and Jayson 1lb 10oz, 11 inches long. They both had to be instantly intubated because neither of them were breathing on their own and the only glimpse of them I got was them in their isolets being wheeled to the NICU. I was informed that Adam didn't have his right arm passed his elbow but they didn't really have any further news to tell me. A few hours later in my room, the Neonatologist that had been assigned to the twins came to tell me that neither of the boys would probably make it through the night because of how sick they were. I was informed I could be wheeled down to the NICU to hold them until "it" happened. Again there was no way I was going to accept that outcome after all we had been through, so I told her I would go down in the morning to see them. My husband had been with them since right after they went to the NICU so after my family left I tried to get some sleep but of course that didn't happen so around 2 a.m. I called the nurse in and asked to be wheeled down there. They called down and my husband met me outside the pod and what I saw when I got in there broke my heart. There they were two of the most beautiful babies helpless to what they were going through. So many machines and hoses and cords. I couldn't hold them unless I was willing to accept that it would most likely be do say good-bye so I just sat there going from one to the other staring at them and trying to be strong enough for all of us. There were many struggles and surgeries during our NICU stay, Adam 4 months and Jayson 5 months, but in the end we were able to take 2 beautiful strong boys home to finally meet their brothers! They are now 3 1/2 years old and doing well. Adam has been completley discharged from all his specialist except for Shriners, which will be a lifetime thing with him being an "amputee" and Jayson has been released from everyone except the pulmonolgist and pediatric optholmologist. Both have developmental delays but nothing too remarkable. I thank God everyday for my children even when they are driving me crazy. I learned to NEVER take life for granted. I apologize if this story has been long winded but I just wanted to share our success story.

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