twin-twin transfusion syndrome :(

jab224

I just found out that I'm very at-risk. Ultrasound yesterday showed that baby B is 30% larger than baby A. I now have to wait 2 excruciating more weeks to find out if I or they have it for sure. Has anyone experienced this and ended up with a positive outcome- ie: 2 healthy babies? I know what the risks are- losing one or even both- I'm hoping someone can tell me that they went through this and it turned out ok?? My heart is already breaking..

 

amjra

I don't have any experience with this, but my T&Ps go out to you!! 

 We are also at risk due to probably having MoMo twins, but we haven't seen anything yet (its too early anyway!).  My peri mentioned that in the cases of TTTS that are serious there is one clinic in Ohio (cleavland?) that does cases of placental separation with a laser - like in 1/2 - but I dont' know if yours are sharing a placenta.  He says that this is the ONLY place that he sends his patients because they do most of those surgeries in the U.S. and therefore they have the most experience.  He said that they have good outcomes at that clinic and only do it for the most severe cases. 

HTH but gee, I am probably just scarring your more.. sorry!  

abbzy85

I had the same scare as you. My babies were also measuring that much apart. I was monitored very closely and had u/s once a week for 4 weeks. As it turns out they think that my babies just have a large growth discrepancy. They see no other signs of TTTS. It's very possible that yours might also. Have they found any other signs? Low fluid / high fluid? Thankfully my fluid levels have stayed the same so now they just watch my smaller baby to make sure that it's growing. They are worried that my smaller baby may just stop growing and that they'll need to deliver me right away. It's scary but at the same time, you need to just relax and hope for the best. Plenty of babies are totally fine even when they do have TTTS

All the best and if you need anything or have any questions please let me know. I'm no expert but I've been through many of the tests.

aspen07

Hi!  I don't really post here--admittedly, I am a lurker, mainly due to the situation we have been going through.  I am 22 weeks tomorrow and just had the laser ablation surgery for TTTS last week.  We were diagnosed as likely TTTS at 14 weeks and were referred to the specialists in Baltimore immediately--we have been monitored there weekly.  So far, things are going well for us, the babies have responded very well to the surgery, and we are feeling very positive right now.  I know LittleWonders, who posts here sometimes, has a blog that chronicles her experience and she has two healthy babies--her story was very inspirational for me early on.  I know you will worry, so I won't tell you not to, but know that there are things you can do.  Knowing I could take action helped me.

How far along are you? Did they measure your fluid levels for each baby?  Do doppler studies of their blood flows?  Do both babies have visible bladders?  The fluid levels and bladders are key to early diagnosis--differentiation in size of the babies may or may not indicate TTTS.  Early on, our babies were not that different in size--the fluid levels were the red flag.  Doppler studies can provide solid confirmation of what is going on with the blood flows and stress on the circulatory systems.

I would encourage you to be calm but to be very proactive.  Are you seeing an MFM or Peri with a lot of experience with mono-di twins?  How have they handled TTTS patients in the past?  Depending how far along you are and what the situation is with your fluid, two weeks can be a long time in TTTS world.  Ours drug out for a while, but that is not always how it is.  There are 13 centers around the country who do the laser surgery.  Baltimore is wonderful but there are other great ones--I know Wisconsin, Florida and Texas in particular have great programs with amazing success rates above the national average.  I feel blessed that we were referred right away.

The TTTS foundation has a website that can give you information on how to talk to your doctor to get the info you need in a timely fashion--they also have a list of the centers around the country who do the laser treatment.

 

I hope this helps and I hope it turns out that you have nothing to worry about!!!

 

jab224

I can't thank you enough for the posts-- it helps me to hear your stories so,so much. I'm 16 weeks and 6 days along. (just figured out how to get my ticker to show up.) The babies are identical and therefore sharing a placenta. I think that they were unable to see a bladder for baby A yesterday because the doc said that's what they're going to check for at the next appointment as well as probably do an amnio to check to see if this is a result of a chromosomal mutation  (I think that's why). He said the fluid levels for both are OK at this point. I'm going to a MFM practice in Voorhees NJ and they are experienced with this. He talked about the potential treatment options, which I think depend on the source of the issue, and the surgical procedures are done at CHOP in PA, which has a good reputation. He talked about the lazer ablation surgery as one of the potential courses of action.  I don't know if they did doppler studies of the blood flows to tell you the truth but I'm putting that on my list of questions to follow up on!

aspen-I'm so glad to hear that your procedure went well and you're having a positive outcome. Were you kept at the hospital after the procedure? Were you put on bedrest after?

Thank you so much everyone for the input and info.

aspen07

I was kept in the hospital for two nights after the procedure and have been on bedrest since.  I may be able to ease into more normal activity after my check up next week--we'll see.  I am so glad to hear your fluid levels were good and that you are in the care of doctors you trust--that is so important and comforting. 

If they are not seeing a bladder on one baby, you may want to press for a follow up in one week instead of two (I would if I were you, but I'm not you!  So do what you and your doctor decide is best).  A lack of a bladder would be Stage II, but it may just be that the bladder is slow to fill (that happened at my initial appointment, and then it came back for several weeks before disappearing again--that, combined with the doppler studies was the trigger to do the surgery for us).   There are a complex series of factors that go into consideration as to when the surgery is necessary, and my understanding is that they are leaning toward being more and more proactive with the laser treatment--but, for a while they thought we might be able to squeak through to delivery without the surgery, so it happens!  The doctors who do this all the time are just incredible, very thoughtful, and, at least in my experience, very kind and willing to answer any and all questions.

Lastly, just to share my experience regarding determining chromosomal issues, I had had a very good NT scan so the folks in Baltimore combined that with anatomy scans to determine that indications were the babies were healthy enough to warrant the laser.  They actually did an amnio (it was optional) when they did the laser since they were in the amniotic sac already, so there was no increased miscarriage risk (on top of the very real one of the surgery) from two separate procedures.

I hope that helps!!  I truly hope that that Baby A's bladder was just a little slow today and that all turns out well.  I visit this board often so just page me if you have questions or need support as things go forward.  Best wishes!

 

Temp159135562506975

i'm sorry you are dealing with this.

Esther (Littlewonders) has 2 healthy girls now after dealing with TTTS. Her blog is https://estherslittlewonders.blogspot.com/  and i think you can contact her that way, too - she isn't on here anymore very often.

prayers to you!

jab224

wow, Esther has really been through a lot..

 thanks again everyone for the info!