Just diagnosed with TTTS

Hey ladies -

I am 21 weeks today. Last wednesday the twins were diagnosed with Twin to Twin Transfusion Syndrome. I had the amniotic reduction procedure on Thursday and I don't go back until this Friday, which feels like forever. Baby A is the recipient and has a good bit of fluid in her belly. Baby B looks good other than being too small (only 8 oz right now). I am apparently ineligible for the laser surgery because my placenta is in a bad spot. Anyone else have a similar story and what did you do? My doc did not put me on bedrest - just told me to take it easy. I am terrified - and could use some success stories!

Thanks!

Alexa

 

First, congrats on your pregnancy and welcome to Twinstuff!

I did not present with TTTS, so I don't have any personal experience to share, but hopefully some of the ladies on here who have been through it will weigh in soon.

Have you been on the TTTS Foundation website yet? I researched on their site during my pregnancy and found a lot of useful information.

Also try our Search function in the upper right corner to see if any old threads my help answer your questions while you wait to hear form ladies in here.

Good luck with your procedure and please keep us posted. We're pulling for you!

 

I was not diagnosed with TTTS, but I was watched very closely by my MFM due to some concerns with a growth discordance. I contacted Dr. DeLia (an expert in TTTS) almost immediately after finding out I have having Mono-Di twins to get his opinions and make that contact. He is a wealth of information! :hug:
Here is a link with more info on Dr. DeLia:

http://www.mywheaton.org/programs/ttts/dr_delia.asp

You can contact Dr. De Lia by email at [email protected] or 414-447-3535.

Also, this is a great website for support and information regarding TTTS. They have a variety of message boards on there as well.

http://www.tttsfoundation.org/

High protein drinks are very important - and bedrest! :hug:

 

:welcome: to TS! I'm so sorry you are dealing with this but hope you get some good info from the other ladies here. Please keep us posted on your babies progress. :hug:

 

:hug: I'm sorry you are having to worry about this right now. I don't have any advice as my twins are b/g, but wanted to say welcome to Twinstuff. :welcome:

 

So sorry, I knwo twin pregnancy's can be stressful as it is already! Just relax, and drink fluids and try not to stress to much. You will get through this and be another sucess story! Hope you find some good information!

 

Please contact Mary or Dr Delia before u do anything else!! Extra protein is great..helped mine. You need to be evaluated for the laser procedure before they do any more amnioreductions.

Mary's info is on the ttts website.

i didn't fully read...I had an anterior placenta as well..i didn't need the procedure but u rally should email Dr Delia..I did and he called me the next day (he pioneered the surgery.)

 

Congrats on your twins. You have gotten excellent info already.

 

Just wanted to add...I was diagnosed at 20 weeks...monitored twice a week...Bed rest and protein literally stabilized the condition..my boys were 5 and 6 lbs at birth with almost equal fluid levels for the 6 weeks prior to delivery.

 

That is awesome! Did you have amnio reduction or just bedrest and protein? Their biggest concern is that Baby A already has fluid in her stomach... but good heartbeats on both, and I think they were still able to see a bladder on baby B but I will have to ask.

I will contact Dr. Delia... I 've had that suggestion several times!

Thanks everyone for all of the great resources and information!

 

bladder is a good sign..that means stage 1. I never had a reduction...my recipient had a mvp of 10 and the donor had a mvp of 2...they didn't feel that it was needed as long as both bladders were visible and the recipients diastolic (i think) flow were good.

 

Our boys had TTTS diagnosed a day before they came at 27 weeks. I was on bedrest from 20 weeks on for cervical issues with weekly ultrasounds. I had protein shakes daily as it was one of the few proactive things that I could do. I am hoping your babies stay put for many more weeks...but my little guys came really early and are doing great, no long term effects from premature birth or TTTS. Good luck...we're rooting for you!

 

She is absolutely right! Contact him right away and get the straight skinny. He will tell you side lying bedrest (left side) and BOOST energy drinks- 3-4 per day. You need to put weight on those babies esp the small one. Good luck and PLEASE keep us posted!

 

Thank you everyone! I am stocked up on Ensure and Boost and spending as much time as possible on my left side... since they are the only thing I can do, I'm going to do it!

 

I was put in the hospital on strict bedrest at 28 weeks. I was suspected to have it at 21 weeks and was followed closely. I had 3 amniotic fluid reductions. Drink a ton of fluids! Cincinnati Childrens Hospital Medical Center has a lot of success with Twin to Twin. Look them up. Good luck and keep us posted!