Any twins out there with TTTS (twin to twin tranfusion syndrome)??

Athanasia - posted on 10/13/2012

I hope your boys are doing great. I had the same problem. My twin identical girls are 19 months today. They are healthy, full of energy. It was very hard, till I gave birth I had twice a week ultrasounds.

Girish - posted on 10/09/2012

Erin,

I live in Boise and my wife and I are expecting identical boys. We have been diagnosed with TTTS and she is currently entering the 19th week of her pregnancy. Would you be willing to share your experience with us in a personal email?

Thanks

-Girish

Brandi - posted on 09/17/2012

How is everything now!? I have twins that are 7 1/2 now and I had TTTS!! Just curious about the effects later in life. I feel like there aren't stories on how they are after! One of my girls has ADHD and I'm really curious if it has anything to do with it. I found another mom on a different site. Her smaller son has ADHD and a learning disabilities. Anyone know where to get info after birth!?



Thanks

Melissa - posted on 10/25/2011

Oh my! I am dealing with the same thing. I have no idea as to what is going to happen. I go to the hospital today to see how the condition have came in a week. My husband and I are a little terrified but are keeping the faith that both of our darling little girls will survive this to full term. I am in germany and it seems that they are not concerned about my nutrition. I keep hearing how ladies are being told to drink protein drinks. I want to do it too, i don't eat enough as it is, but didn't want to do anything that may make matters worse. Should I talk to an American? I am so glad I am not the only one.

Kara - posted on 07/06/2011

We were also diagnosed with TTTS and the boys are now 2 1/2!! For everyone out there we know how scary and deadly this disease can be. We also know how hard it is to find good information, not so scary, on the internet. I have been privilaged enough to meet up with a great lady who has the idea of adding all the information on one site, with all the links to TTTS Foundation, and Fetal Hope and also be a support group for families affected by TTTS. We are trying to gather information to make this a one stop place for all those at all stages of TTTS. If you could I would love if you could stop by and check it out. TTTSupport.com is the place.

Tiffany - posted on 04/17/2010

My boys also had ttts. They remained in stage 1 without surgery. I was on modified bedrest and drank boost on the advice of my docs. The condition even improved. At 34 weeks and 5 days my placenta was getting "old" so I had a c-section. My boys were 5 lbs 4 oz and 6 lbs. I was diagnosed at 20 weeks and had twice weekly ultrasounds to monitor the condition. We were extremely lucky. Glad to hear that your surgery was a success.

Karen - posted on 04/17/2010

I was one of the unfortunate souls who didn't have a success story with my twins. TTTS was suspected at 26 weeks due to discrepency in the babies weight. The dr just wanted to monitor the weights for the next couple of weeks, due to the positioning of the twins (they shared the same sac), they could not positively identify the membrane. I was put on bedrest and protein shakes in the meantime just in case. Unfortunately at 28 weeks I went into premature labour, and the girls were born via emergency c-section. Ava weighed 1200g, and Sophia 850g at birth. They were immediately transferred to NICU for close monitoring and oxygen. Sadly, one week after the birth, our little princess Sophia passed away due to major complications from TTTS. Ava remained in NICU for nearly 2 months on oxygen, before being allowed to come home. She is now 18mths old and very healthy, with no major complications from the TTTS.

Christina - posted on 04/16/2010

sorry just read all thep osts and seen that you had the laser surgery too. :o)

Christina - posted on 04/16/2010

that's wonderful! i was pregnant with triplets (two of which were identical twins and then a singleton). we found out at 19 weeks that our identical girls had TTTS and had the laser surgery done to "sever the ties" between the two in hoeps that they both would survive. the girls were the same as your boys with 20/80 placental sharing but by the time they found out what was going on elisha was already half the size she should have been. they weren't sure she would be strong enough to make it, and she wasn't. she passed away in the womb on march 12, 2009. i am so glad to hear about your story off success!! the Lord has blessed us all with beautiful children. i am curious as to what surgery method you had?

Janette - posted on 04/10/2009

Erin, congratulations on your little miracles.  My boys were also born at 29 weeks and 5 days and were 3lbs 7oz and 1lbs 15oz.  They turn 1 on April 27th.  They spent the first 3 month in the NICU and had many complication and set-backs like PDA ligation surgery, edema, renal failure, Stage 2-3 IVH, PVL, Atelectisis, chronic lung disease, infections and so much more.  But now it's amazing how well they are doing!  I'm also here to answer any questions and concerns about the NICU if you have any.  You can also send me a message on Facebook if you want to talk about anything.  And the TTTS Foundation website and forum is also a great place to ask questions.  Try to get some rest, I know how tiring it can be to go to the NICU every day and night.  And congrats again!

Erin - posted on 04/10/2009

Rachel: I got the laser surgery done at 19 weeks and was on moderate bedrest and protein after that. It was so hard to drink/eat that much protein but all the doctos say it makes a huge different. My twins also had selective intreuterine growth retriction (SIUGR) which made things worse. My little guy only had 20% of the placenta so there was actually very little chance of him making it. But he was a fighter and did!! We had weekly ultrasounds after the surgery and things usually always seemed to get better, it was just a very timely process and took lots of patience to realize even though you get the surgery it's not going to get fixed rght away.  Things never got to the ideal stage they wanted but there was little improvments here and there just enough to keep my boys going that counted. I started going into pre term labor at 25 weeks and was put on complete bedrest then at 27 weeks got put in the hospital on complete bedrest and lots of meds to stop labor. and i was able to make it to 29weeks 5days. (Just born April 08,2009) They are very little 3lbs 7oz and 2lbs 2oz but are doing so good so far!!! It has been such a long journey and I'm just thankful we made it this far, things were bad from the start and we didn't have very good odds with them but we just stuck to what we thought was right and now we have two beautiful little boys. Them being in the NICU is a totally new journey now but the key is to just take one day at a time and stay positive.  I know this is a very hard thing to go to and I'm here to answer any questions, concerns or anything!!! Take Care of yourself and those babies!!! It's all worth it in the end. : ]

Rachael - posted on 04/10/2009

Hi Erin: Your story gives me great hope! I was diagnosed with TTTS at 16 weeks. I am 17 1/2 weeks now with twin girls & we are at the wait & see stage. I have done a lot of research & it is very scary!! I'm so happy to hear your boys are doing good! Did you ever go on bed rest & protein drinks?

Erin - posted on 03/09/2009

yeah the laser surgery i got done is fairly new i believe. it is actually still under experiment in the US and the doctor that did myn has been doing it for around 5 years i think but still hasn't one large amounts of them. but i'm thankful for going threw with it and would suggest it to anyone who's twins get ttts. it's been so worth it to me!

Gabrielle - posted on 03/09/2009

Awesome update Erin! Ten years ago (or at least I wasnt told) surgeries didnt exist for TTTS. My son is now 10years old, check out my facebook pics.

Christy - posted on 03/03/2009

I got the news around 19 weeks, they couldn't be for sure since my babies were in the same sac and shared the fluid around them but they monitored them by weight, so I wasn't a canadite for the sugery, but I was watched very closely and everything turned out fine!!!!

Erin - posted on 03/02/2009

That's so great to hear!! Your boys look very healthy and are very cute!  I'm almost 25 weeks now and things continue to get better each week. Last week my doctor said he is amazed at how things have gone so far so that was very good to hear! Just got to stick it out for a couple more months!!! They are starting to grow more even now and are very active as well.  It is very reassuring to feel them move often.

Thanks for sharing your story.

Kelly - posted on 03/02/2009

Hi there! My twin boys had TTTS. We were diagnosed at 18 weeks and like you said, it is very shocking and scary. We had laser surgery as well and an ambio-reduction. When we were diagnosed they determined that we were in stage 3, almost stage 4, so it was pretty advanced.



After the surgery we were monitored very closely as well. They continued to grow pretty evenly and were very active. All of the physical side-effects reversed in utero. Then I developed gestational diabetes, which did further damage to my placenta. But amazingly, it still functioned normally right to the end. I was on a very regimented diet and was monitored 3 times a week by ultrasound at the end. Finally I begged my doctor to induce me at 37 and 1/2 weeks. They weren't going to let me go much further anyways, because of my placenta looking so rough. So on August 5, 2008, Ronan and Jack were born. Ronan was 7 pounds and Jack was 6 pounds and 6 ounces. I delivered via successful V-BAC. (vaginal birth after c-section)



The doctors at our hospital said we were a huge success story. After about 25 weeks, they said the boys had positively no signs of TTTS anymore. We were sooooo blessed. My only advice is to follow everything your doc says to a T. At least that's what I did. And I tried to take it easy as much as possible, which wasn't easy with a 2 year old girl at home.

Janette - posted on 02/22/2009

Hi Erin, it's great to here about new and better surgeries to resolve TTTS.  I have heard so many tragic stories about women whose doctors didn't catch TTTS in time.  Hopefully some day we don't have to worry about TTTS.  Congratulations and keep us posted on you and your babies!

Erin - posted on 02/18/2009

Janette-

  I have been very careful about trusting my instincts but everythings has gone great so far so i'm so lucky. but the surgery i got is called laser fetoscopic coagulation which means they go in and laser off all the blood vessles my boys are sharing. so TTTS can't occur again because they no longer share any blood vessels. they supply completely for themselves now. this also means that if something were to go wrong with one twin it cannot affect the other cuz they no longer share the blood vessels. i know there is different sugerys that can be done and the one i got is very rare. it's actually still under experiment in the US so i had to sign a ton of wavers and what not before i could get it done. But England has been using if for a few years now and has had the best results so that is why i went threw with it.  And the specialist that ended up doing my surgery went to England and learned it first hand from the best so i felt very safe with him caring for me and my boys. Just hoping to make it threw the rest of my pregnancy as long as possible!!!

Erin - posted on 02/18/2009

Janette-

  I have been very careful about trusting my instincts but everythings has gone great so far so i'm so lucky. but the surgery i got is called laser fetoscopic coagulation which means they go in and laser off all the blood vessles my boys are sharing. so TTTS can't occur again because they no longer share any blood vessels. they supply completely for themselves now. this also means that if something were to go wrong with one twin it cannot affect the other cuz they no longer share the blood vessels. i know there is different sugerys that can be done and the one i got is very rare. it's actually still under experiment in the US so i had to sign a ton of wavers and what not before i could get it done. But England has been using if for a few years now and has had the best results so that is why i went threw with it.  And the specialist that ended up doing my surgery went to England and learned it first hand from the best so i felt very safe with him caring for me and my boys. Just hoping to make it threw the rest of my pregnancy as long as possible!!!

Janette - posted on 02/17/2009

I agree with Gabrielle and Katherine.  if you think there is a problem, definitely trust your instincts. TTTS can happen suddently.  When I was in the hospital at 28 weeks the babies were on monitors and they had done a couple ultra sounds and told me everything was fine and the goal was to stop the contractions.  My specialist wasn't scheduled to see me again until Tuesday.  My stomach had expanded so much in a couple of days, the pain was unbearable.  I couldn't eat, sleep or find a position that didn't hurt.  They didn't want to give me pain medication because of the babies.  I knew something was wrong and insisted that the nurse call my specialist.   On Sunday he had to do a surgery for someone else so before that surgery he came in to do a quick ultrasound on me.  That's when he discovered that TTTS had occurred and I had an emergency C-Section 2 hours later.  If he had waited until my next appointment on Tuesday, I would have lost Jared and Jonah would have had disabilities.  They truly are my little miracles.  So if you feel that anything is wrong or if your tummy expands suddenly, go to your specialist or the hospital right away.  I heard that TTTS can still occur even after surgery.  Good Luck in the rest of your pregnancy.  And if you have any questions, please feel free to ask me.

Katherine - posted on 02/17/2009

Erin - I was lucky in that I was already being monitored closely due to blood pressure issues.  I thought it was funny that I was craving all sorts of healthy things that my kids needed.  I can't tell you how many peanut butter/banana sandwiches and bowls of Raisin Bran I went through.  I was all about some fiber and protein!

My kids are now 2 with a 1 year old baby brother.  I had one that was on an apnea monitor and caffeine supplements for eight months; the other was in physical therapy for torticolis and had to have tubes put in his ears.  It seems like once we hit the 18 month mark, everything was roses.  Just your average childhood viruses now.

Gabrielle - You are definitly right about trusting your instincts.  My doctor told me to try and hold on for another two weeks.  I told him it wasn't going to happen - I had my kids the very next day.

Katherine - posted on 02/17/2009

Erin - I was lucky in that I was already being monitored closely due to blood pressure issues.  I thought it was funny that I was craving all sorts of healthy things that my kids needed.  I can't tell you how many peanut butter/banana sandwiches and bowls of Raisin Bran I went through.  I was all about some fiber and protein!

My kids are now 2 with a 1 year old baby brother.  I had one that was on an apnea monitor and caffeine supplements for eight months; the other was in physical therapy for torticolis and had to have tubes put in his ears.  It seems like once we hit the 18 month mark, everything was roses.  Just your average childhood viruses now.

Gabrielle - You are definitly right about trusting your instincts.  My doctor told me to try and hold on for another two weeks.  I told him it wasn't going to happen - I had my kids the very next day.

Erin - posted on 02/17/2009

I'm so sorry to hear that. But thank you for the advice and wish you the best.

Gabrielle - posted on 02/17/2009

Hi Erin



I'm unfortunately not one of the TTTS success stories. I lost one of my twins at 36 weeks from TTTS. My doctor was oblivious to what was going on. But it was my first pregnancy and didnt know better. I applaude you and the other moms that are doing whatever it takes to make sure your precious babyies are born. All of you are blessed for that. My advice to new moms pregnant with multiples is to trust your instinct and if something doesnt seem right-donot let it drop.

Erin - posted on 02/16/2009

Katherine-

Yes TTTS can have some scary results. But they found out my boys had TTTS at 18 weeks and started doing things to help it right away.  I'm still pregnant (23 weeks) and things have gone great since i got surgery done. i had to go to seattle to do it because it is only offered in 8 cities in the US. but i i go in for weekly ultrasounds and have to eat lots and lots of protein!!! my boys are still measuring a little bit different in size but they are both still growing and things are looking better and better each week so i'm so thankful. i'm hoping things will just keep going good from here on out and my little guy will continue to grow!!!

how old are your twins now? and how are they doing?

Katherine - posted on 02/16/2009

Hi Erin! 

I'm Katherine from Louisiana, and I was late in my pregnancy (35 weeks) when I developed TTTS.  One week, everything was measuring fine; the next, my kids were in trouble.  I was went to the hospital for monitoring three times and then sent to labor and delivery after the last round for an emergency C-section.  My kids weighed in at about 3 and 5 lbs and hung out at the hospital for another month.  (I had one on an apnea monitor and another fighting to gain weight.)

I'm glad your kids are well.  TTTS can often have unfortunate results.  Did your kids have a large weight difference when they were born?  A lot of people didn't believe mine were twins because one was so much bigger than the other.

Janette - posted on 02/12/2009

Hi Erin, our doctor was following us very closely through out the pregnancy.  At 28 weeks, my ultrasound showed the boys were weighed about 2lbs 6oz and 2lbs 12oz.  A few days later I started having contractions and went into the hospital for monitoring and to stop the contractions.  After 4 days in the hospital trying to stop the contractions and giving me steroid shots to help the babies lungs, my specialist found that TTTS had occurred and I had an emergency C-Section at 29 weeks.  The donor twin weighed 1lbs 15oz and the receiving twin weighed 3lbs 7lbs.  Both of them had many complications (too much to get into), but after 3 months in the NICU they were finally able to come home.  One spent 89 days and the other spent 102 days in the hospital.  They are now 9 months old and doing well.  Congrats and good luck on the rest of your pregnancy. 

Have you already checked out the TTTS Foundation website?  It really helped me during this experience.

Janette - posted on 02/12/2009

Hi Erin, our doctor was following us very closely through out the pregnancy.  At 28 weeks, my ultrasound showed the boys were weighed about 2lbs 6oz and 2lbs 12oz.  A few days later I started having contractions and went into the hospital for monitoring and to stop the contractions.  After 4 days in the hospital trying to stop the contractions and giving me steroid shots to help the babies lungs, my specialist found that TTTS had occurred and I had an emergency C-Section at 29 weeks.  The donor twin weighed 1lbs 15oz and the receiving twin weighed 3lbs 7lbs.  Both of them had many complications (too much to get into), but after 3 months in the NICU they were finally able to come home.  One spent 89 days and the other spent 102 days in the hospital.  They are now 9 months old and doing well.  Congrats and good luck on the rest of your pregnancy. 

Have you already checked out the TTTS Foundation website?  It really helped me during this experience.

Rhonda - posted on 02/12/2009

Hello Erin......I'm Rhonda from North Dakota. I was also diagnosed with twin to twin transfusion syndrome, 4yrs ago. Me and my partner were also very shocked, and devastated. I was sent to a specialist in Minnesota to see what my options were, if I was to have laser surgery or what. It came down to it that I had a mild case of TTTS and I did not have to have the surgery. But  because of the consequences that can happen with TTTS, I was so excited and yet  very blessed to find out that I did not have to have the surgery. But  what I did have to do to keep my two lil' boys alive was to drink those Ensure drinks...one can twice a day.  I also developed gestational diabetes, and had to check my blood sugar everyday, and was put on stricted diet.  And also I had to do follow-up appointments and have Ultrasounds every week, sometimes twice a week. I was always at the doctor, but they took very good care of the three of us. I  had them a month early, C-Section.  I learned alot about TTTS, and it is very hard and stressful. My two boys names are Eli & Ethan. I always tell everyone that they are the busiest lil' boys in the universe, and I think they are....never a dull moment, very energetic.  And very healthy boys at that!!!  I wish you all the best!!!