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TTTS

Caryn - posted on 03/06/2009 ( 5 moms have responded )

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Anybody go thru twin to twin transfusion syndrome?

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Ann - posted on 06/13/2009

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When I went in for my 26 week appointment I was told to get up to Dartmouth sooner than later. They told me that the twins were not growing at the same rate. At Dartmouth they diagnosed my girls with TTTS 12 hours after being arriving my girls were born. 75 days in the ICN. They were not kidding about the rollar coaster ride you'd be on. I almost lost my girls with their birth, their 1st bacterial infections, their viral infections the menengitis that formed from the viruses... They came home on oxygen. The recipient had her heart valve repaired and her skull unfused. (the latest cardio appointment found another hole but believed to be not a big deal. It just tells me its still not over) Now they are 10 months old and doing well but I still worry.

Kristy - posted on 06/12/2009

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had twin girls feb 1, ttts weighing 3lbs 10oz and 4 lbs 12 oz, I wasn't diagnosed until the end, they came seven weeks early spent some time in the hospital the bigger one was in longer because she had a more difficult delivery, they are now 4 months old weighing 16.5 lbs and 13.1 lbs, and measuring an inch and a half different, they look the same just different sizes, but are both very happy and very healthy!

Sharon - posted on 05/08/2009

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Hi Caryn. I am new and just asked if there were any parents out there whose twins were diagnosed with TTTS. I am happy to say my identical twin boys are 16 now. I am willing to share our story or answer any questions

Rachael - posted on 04/10/2009

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HI - I am currently 17 1/2 weeks pregnant with identical twin girls (Payton & Maren). I was diagnosed with TTTS at 16 weeks. I have done a lot of research & have started drinking Boost protein drinks & modified bedrest .... 2 hours in the morning, 2 hours in the afternoon, & 2 hours in the evening after dinner. We are in the "wait & see stage" so I'm trying to do everything I can to help the girls. We go for ultrasounds weekly & have been told things can change in an instant. We will go for laser surgery in Florida if things get worse before 24 weeks. I think it is great that you have researched TTTS even though you have no signs of it. It's great to be informed just in case. Best wishes for a wonderful pregnancy & two beautiful, healthy girls.

Karlye - posted on 03/10/2009

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I am 24 weeks with identical twin girls right now, and luckily there are no signs of TTTS at this point. I live near Pittsburgh, so my perinatologist is at Allegheny General Hospital. Apparently they just published a paper last year about TTTS, and they have found the drinking 3 bottles of Ensure or Boost per day can actually prevent TTTS from occurring. Also, if the babies are already showing signs of TTTS, but it is early, drinking these can reverse the effects. I hope, if you are dealing with this, that my post helps you, or anyone else. Best of luck.

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