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Twin to twin syndrome

post #1 of 10
Thread Starter 
Hello all. I am new here trying to keep sane and find some support. It looks like my identical twin boys are on their wAy to experiencing ttts. greensad.gif I am at 19 weeks and I go in next Tuesday for an ultrasound to see if the situation has gotten better or worst. Is there anyone on here that can offer any advice on the matter or has gone or going through this? I am hoping everything will just turn out for the best but I do want to prepare myself for what may happen.
post #2 of 10

What a scary thing to be going through right now! I was very afraid for the majority of my pregnancy that I had mono-mono twins, which almost guarantees TTTS so I spent a very long time worrying. Prepare yourself, but don't over-do it. Try and keep positive, take it extra easy on your body, and take it one day at a time! Let nature and God work out what is meant to be, and you just be mom! I wish you the best and I will keep your and your precious ones in my prayers!

post #3 of 10

We had ttts.  My recommendation is to have a very thorough look here http://www.tttsfoundation.org/   there are some religious references on the first page so if you are not religious please try to look past that as that is probably the most complete sight your going to find for information.  They also have a facebook page.

Hang in there think positive but I would definitely be preparing now for the very real possibility of extended complete bed rest as your pregnancy progresses.

hug.gif It can be ok, please try to stay positive.  Our boys were born at 35 weeks weighing at 3 pounds 9 ounces and 5 pounds 2 ounces the larger twin had a thickening of the muscle of the heart (and they had some non ttts related problems as well) but both of them are home and doing great now.  Your family will be in my thoughts.hug2.gif

post #4 of 10
Thread Starter 
Thank you so much girls. We have a few more issues that we are dealing with as well. It's so good to hear frOm someone that has gone through something like this. Did you have a procedure done or did it sorta correct itself?
post #5 of 10

Mine are TTTS survivors as well -- born vaginally at 34w at 3.11 and 5.10. I was dx at 18 or 19w. 

 

I did not have any treatment, just very careful monitoring during my pregnancy. I had a care provider who was very experienced with twin pregnancies and TTTS -- I think that's the key. I know someone whose lost a twin to TTTS because the doctor didn't even recognize it. 

 

I second the recommendation for tttsfoundation.org. Also, contact Dr. De Lia, he's a TTTS pioneer http://www.mywheaton.org/programs/ttts/index.asp

post #6 of 10

TTTS survivor mom here as well, I cannot recommend TTTS Foundation and getting in touch with Dr. De Lia enough either!

 

You are going to need to be tough.  It sucks, but your babies need you to be strong and be an advocate.  Unfortunately, if you are AP you may face pressure from all sides, as people may openly disapprove of your getting more than one u/s, ect.  (I had a fight with an AP friend about this, and to be honest, even to this day I feel a twinge of anger/sadness that she was so clueless and uncompassionate)  If you are not already in the care of a provider who is VERY FAMILIAR with TTTS (and most are not) I really recommend starting to provider shop ASAP or finding out if your provider is truly open to learning from the TTTS foundation.  Unfortunately there are *still* OBs out there who practice with very outdated info about TTTS and barbaric treatment methods.  The TTTS foundation can help in that regard, but you will still have to deal with a lot of ignorance and that combined with the high stress pregnancy can really get to you.

 

I also would start drinking protein shakes (Boost, Ensure, or the equivalent) 3-4 x daily ASAP.  It's something simple you can do, and does seem to help.  No, it's not as crunchy/organic (maybe there are better alternatives now than when I was pregnant), but I do think that really helped my donor twin.

 

At the time of my pregnancy, Florida was the only place you could get the surgery (I'm in Seattle--my local hospital was setting up their TTTS program but they hadn't gotten their equipment yet).  There were very stringent guidelines for when you got the surgery, and my boys hovered right below the cutoff the entire window of surgery time, so we did not get the laser treatment.  Now at least there are more regional options, depending on where you are.

post #7 of 10
Thread Starter 
U don't know how much your posts help and give me hope. I'm In ny and being monitored by colombia hospital for now. My doctor sent me to them soon as the complications started. On the ttts foundation site I see that they list 2 doctors from thAt hospital. So I hope that they are the best for the procedure if there comes a point where we will need it. I go in this Tuesday to look at babies Again.
post #8 of 10

here is a organic and amazingly tasty protein shake that i have nearly lived on while preggo with my twins and i'm now stocking up for my early breast feeding days to keep me going, i cant recommend it stronger!

 

http://www.supersup.com/Orgain-sweet-vanilla-bean-1211oz-Liquid.html

post #9 of 10

twinbabyboys, I have no experience with this or advice really, but wanted to let you know that I am thinking of you and your precious babies and will send up prayers in their behalf! Keep us posted!

post #10 of 10

OP I was just thinking about your post and wondering if you have had any news about your babies recently?hug.gif

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