TTTS-long

mle78

I was wondering if anyone else here had any experience with TTTS.  I went in for a growth/cervix check today with my MFM and they were very concerned with baby B's fluid level.  They also couldn't see the bladder or kidneys on the U/S so they were worried that baby B could possibly not have kidneys.  My husband and I were devastated at this possible news.  We were told that there needed to be some more testing done before they knew exactly what was going on and we were given information about referring to a facility in St. Louis that could give us some more answers and could also do a laser procedure if in fact what is going on is TTTS.

We ended up having an amnio done today for testing purposes and also to remove some of the excess fluid around baby A.  The doc ended up removing about 270 cc of fluid total.  She said sometimes the removal of the excess fluid can sometimes help resolve the TTTS. Then they rescanned baby B and were able to see the kidneys.  So, we did leave with at least one less possibility that we were very grateful for.  Next week we're supposed to have an appointment in St. Louis to be evaluated with U/S and fetal echo to see if the laser procedure is a possibility. 

 Just wondering if anyone here has had this procedure done or known anyone else who has.  All of the info we got today has just been so scary and we're trying to get as much good additional information as we can.  Thanks a lot if you've read all this. I'm just totally freaked out.

caitdana

I am so sorry. TTTS sucks. I was watched from 16 weeks forward for it. 24 weeks went to Cincinatti to see if I was a canidate for the surgery. They said I was not canidate and they werent even sure I had TTTS and sent me home. 27 weeks I was dx with IUGR and TTTS and had my girls at 27 weeks 4 days because Ella's amniotic sac was so bare it was stuck to her face. Everything is scary when you have the TTTS talk. No one understands. My mom, MIL and step MIL all had a set of fraternal twins so they didnt get why they were upset about growth differences and fluid differences. The actual trip to Cincinatti was scary because I didnt know what to expect. It was amazing to have such highly qualified and specialized people take care of me. I am thankful to this day to know I did everything I possibly could to keep them cooking. TTTS Foundation has some good resources and the founder Mary will talk to you. She is really nice and she knows her stuff. If you need to talk I am here for you because I know how scared and lonely I was. You can email me anytime at caitdana at hotmail dot com

erinruns

I was diagnosed with Stage I TTTS at 18 weeks and twice weekly u/s from then until I delivered.  At 20 weeks they did an amniotic reduction which stabilized things until 30 weeks.  If things hadn't stabilized, I would have gone to Cincinnati to be evaluated.  I delivered at 31w6d.  In the end, it was likely more placental insufficiency than TTTS, but it was still a long road.

 

Definitely contact the TTTS Foundation.  They have great information online about the different stages of TTTS and when they'll intervene.  I know of at least one MoM who had surgery in Houston, and another who had 5 amniotic reductions.  After a certain point they won't do the surgery, I think maybe 25 weeks?

I agree that it's such a scary situation and no one will understand what you're going through.  Make sure you are monitored closely, and do whatever research you can so you can make informed decisions. 

bkjcwedding

Hey there!  I also had TTTS and was seen by the doctors in Cincinnati.  I attempted to have the laser procedure done at 22 weeks, but they were unable to fully map the blood vessels and so instead did an amnioreduction/amnioinfusion.  It helped reduce the discordance in size and stabilized Baby A's heart enlargement.  I then went home on bedrest and procardia until my water for Baby A started leaking at 28 weeks.  Thanks to hospital bedrest I made it to 32 weeks at which point i gave birth to 2 fairly healthy babies.  (4 and 5 weeks of NICU time respectively for my boys....as growers and feeders)

TTTS is a scary diagnosis but there is help.  Ditto what the PP said about the TTTS Foundation and Mary.  So helpful!  Also, Dr Crombleholme (And Dr Polzin) at the Cincinnati Fetal Care Center are truly miracle workers who gave me hope when no one else could.  They are my heros!!!

Good luck to you.  Feel free to PM me if you have any questions.  I'm happy to share what I know.

mle78

Thank you so much for your responses.  I have looked at the Foundation's website and it really seems to be advocating for bedrest.  My MFM didn't tell me I needed to be on bedrest and the coordinator in St. Louis didn't mention it either.  I work as a nurse in an ICU and I'm supposed to work 3  12-hour shifts in a row starting tomorrow. I'm just worried about being on my feet that much this weekend before my appointment next Thursday.  Did any of you guys have to be put on bedrest just  because of the TTTS?  Thanks again.

wonder-kitty

TTTS is scary and can change so quickly at any given time. I was diagnosised at 18 weeks and went immediatly to Cincinnati for further testing.  I was in the early stages and the girls weights weren't too off, but the fluid levels were not good. Baby B hardly had anything left. After all the testing in Cincinnati, we opted to go with an amnio-reduction first. We we're really hoping to avoid surgery if possible. They removed like 1300ml of fluid from baby A.  For us, the amnio worked! It totally stabalized everything and we didn't have any other issues throughout the rest of the pregnancy.  I continued to travel to Cinn. through week 26 just as a precaution as that's the latest they'll do surgery. Then I saw my MFM every week till I delivered at 36.5 weeks at my scheduled c-s.  They went home with me 4 days later!  My girls are now almost 6 months old and thriving.

I was on a moderate bedrest from 20 weeks on. I was told to stay off my feet. No cooking, no cleaning, no nothing! It was hard cause I felt fine and the girls were doing well each week, but I tried really hard to not do too much. I also took Procardia to help with the blood flow to the babies hearts.  This is a high blood pressure med, but it shows to help with TTTS. I would recommend Cincinnati if you can at all travel there. I'm in Illinois and my MFM didn't want to send me to STL because, while they may be great docs, they've only been treating TTTS for a few years. Cincinnati is one of the top places for treating TTTS and they've been doing it a long time and are very knowledgeable and skilled in this area. Good luck to you! If you haven't found the TTTS foundation Facebook page, check it out. there are a lot of people going through the same thing and they offer lots of support and encouragement.

royalcrown1

My twins were diagnosed with TTTS at 21w2d at my anatomy scan.  Baby A's fluid was very low and they could not find a bladder.  We immediately went to Cincinnatti.  During the pre-op MRI, I went into preterm labor.  They took off 6L (yup, 6 liters!) and placed a cerclage.  A week later, I completed the pre-op testing adn I was determined to be in stage 3.  They attempted the laser procedure, but because of my placental placement, they were unable to complete it.  I continued to have three more amnioreductions (3L, 1.2L, and 600 ml).  My last amnioreduction was at 28 weeks.  I was also monitored with NSTs, biophysical profiles, and fetal ECHOs.  It was terrifying, and I got to be very friendly with the people at my MFM office and labor and delivery.  End result:  2 happy, healthy babies!  It is scary and the things you read on google make it sound even more scary, but there are happy endings.  Try to stay positive.

Also, I was put on modified bedrest by my MFM as soon as I was diagnosed.  I was told I would stay on bedrest if I had the laser procedure.  I am also a nurse in an ICU and I went on short term disability that day.  I hope your hospital is understanding if you MFM wants you off your feet.

Let me know if you have any more questions...good luck! 

 

bkjcwedding

mle78:

Did any of you guys have to be put on bedrest just  because of the TTTS? 

Yes.  I was put on bedrest at 18 weeks.  They said that if I stayed off my feet the blood that would be going elsewhere (arms, legs, and feet) could be available to go to my uterus instead.  That maybe a dumbed-down version of things for me to understand, but I followed the dr's orders.  Modified bedrest (no working, but I did still go to lunch a few times a week) until 24 or so weeks... strict bedrest until 28 weeks... and hospital bedrest until I delivered at 32 weeks.