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Twin to Twin Transfusion Syndrome (TTTS)

AshleyJ0125AshleyJ0125
in Multiples

I am 16 weeks pregnant with twins. The twins are sharing a placenta and have  thin sac separating them. This means we will definitely be having same sex identical twins, but there is also a risk for Twin to Twin Transfusion Syndrome.

Although it's rare, I don't find that fact to be comforting since I last my first pregnancy at 19 weeks to a rare syndrome called Triploidy.

I know TTTS can pop up at any time starting about now and it CAN be treatable if caught in the early stages.

Of course I read way too much on the internet about the syndrome. I was wondering if anyone had any experience with TTTS? It would be really reassuring to hear a success story and/or stories of my types of twins who never developed the syndrome.

 

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Re: Twin to Twin Transfusion Syndrome (TTTS)

  • acb+4acb+4
    Thankfully,  I don't have any experience with TTTS ( there are posters on here that do), but I just wanted to let you know that my girls are mono/di too and are doing well at 30 weeks.  Good luck!
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  • americanaamericana member
    I had mono/di twins. I had to go for u/s every 3 weeks to check for TTTS. My girls never developed it. I did go into PTL at 34 weeks, 5 days - but they were a good size (5 lbs. 5 oz. and 5 lbs. 6 oz.) and only 1 oz. difference in size. I know what you are going through though, I would worry at every u/s appointment. But hang in there, not all identicals end up with TTTS.
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  • reillyroowhoreillyroowho member
    Hey there. First of all, stop looking at stuff on the internet. There is such a thing as being over informed! At around 16 weeks we had an ultrasound that discovered a fluid discrepancy. Because of this, we were sent to an MFM that specialized in TTTS. We began weekly monitoring that kept a close eye on blood flow, fluid, and growth. Things never went past stage 1 and we never had to have surgery or anything. However, I was put on a very high protein diet that was made to combat growth restriction (170 g a day!) I also took baby aspirin for blood flow across the placenta, lots of extra folic acid, and took it easy. I would recommend you start drinking protein shakes (pure protein cans have 35g each!) and start seeing a Perinatologist if you aren't already. They might also advise you to have a c section to reduce the risk of acute TTTS during labor (you could have a TTTS free pregnancy and then all of a sudden begin blood transfusion during labor). Anyways, the good news is that I had 2 perfectly healthy LARGE preemies at 34weeks 5 days. They were 5lbs 5oz and 6lbs 3oz. The early labor didn't have anything to do with TTTS. It was PreE and pre-term labor that finally bought the C/S date. Good luck, try to relax, and drink that protein lady!
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  • AshleyJ0125AshleyJ0125

    Awesome story. I'll def keep the protein in mind as well. We have our first "screening" for this on Monday so it's good to hear success stories...makes it less scary.

    Haha I also enjoy your 'firm' but informative response. Reminds me of myself!

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  • srbmvpsrbmvp member

    My boys were mono/di, and it's a good thing I always had my u/s before they checked my blood pressure, b/c I was on pins and needles at every single appointment, so worried we'd end up with TTTS.

    Thankfully, we had a completely uneventful pregnancy, and when my boys were born at 37w1d, there was only 1 ounce difference between them!

    The idea of TTTS is very scary, but as long as your doctors are vigilent about watching out for it, you will catch any problems in time. And in the mean time, stop reading about it online, it will only freak you out!

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  • adacopeachadacopeach

    I had a mono/di pregancy and at week 22 my MFM discovered that TTTS set in.  I would strongly advise you to see an MFM if you aren't already.  I was at my OB's office 36 hours before my MFM appointment and she didn't see anything that alarmed her.  After the fact, she said that maybe the fluid level on my donor was low.....she just wasn't looking for TTTS.  We had the laser surgery the very next day and through amazing doctors and the good Lord above my boys made it safely to this world at 31w5d weighing 3lbs 2oz and 2lbs.

     If you want to research, the only place you should look would be the tttsfoundation.org.  There is still a lot of misinformation out there and tons of very scary stories.  If you are seeing an MFM, trying to eat/drink as much protein as 175grams a day, drinking lots of water, you should try not to worry about it.  Only 15-20% of mono/di pregrancies experience TTTS.  There are a couple of signs that I had, but didn't know what was going on.  I gained literally 7lbs overnight (water weight), my stomach seemed to grow again overnight, and I started having contractions.  This is my first pregnancy, so I didn't know that they were contractions at the time.  My stomach would just get really hard for 30-60 seconds.  I thought that the baby was turning over or moving around, when they were contractions!!  Best of luck with your pregrancy....everything will turn out perfect :)

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  • luvnnycluvnnyc

    We had level 3 TTTS And my best advice would be to not worry about it until you have to. See an MFM for careful monitoring. Our MFM saved our girls (our donor twin was given a 5% survival). And if you must read something only do so from the TTTS foundation website.  

    Our girls were born 1 week ago today at 33w 5d - 4.7lbs & 2.14lbs and are doing great in the NiCU! And it was emergency csection due to little to no activity from our donor twin. Turns out her umbilical cord was wrapped around her thigh, arm & twice around her neck. And our smaller (donor) twin is doing better than her sister!

    So don't stress about something that is more likely no to happen. But do make sure you are being monitored.  

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  • nghithynghithy
    I'm 28 weeks 5 days with the same mono/di sharing placenta.  I'm having twin girls.  They said however that does not necessarily mean they are identical, only 70% chance.  So far my twins are measuring the same.  I do have to go in every 2 weeks for sono to make sure they don't develop twin transfusion syndrome.  
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  • JenIrvJenIrv
    Hi, I know I am late. My boys were diagnosed with stage 3 TTTS at 16 weeks. I was flown from Hawaii to California for emergency laser sugery. I had no issues after the surgery, went to 37 weeks and 1 day before being induced and they were 6 lbs 7 oz, and 5 lbs 11 oz. I would suggest you talk with you doctor about your concerns and make sure you are monitored frequently.
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  • AshleyJ0125AshleyJ0125

    Thanks for all of the great feedback ladies!

    You are right, it is dangerous to read too much on the internet but of course it's normal to be concerned about the health of your babies...especially if you've had some bad luck in the past.

    Yesterday we went for a sono (16 wks and 5 days) and the babies were both perfect. Both were exactly 5 oz and we measured and cleared all of the bones and organs, except  the hearts (still a little too early). There was no excess fluid or signs of TTTS.

    I feel relieved. I know that many signs starting showing up at 15-16 weeks. I feel like the longer we go without any problems, the better off we'll all be. We will be monitoring through sonogram every 2 weeks.

     Also, we found out the sex and we'll be having twin boys! :)

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  • kiwi443kiwi443 member

    imagenghithy:
    I'm 28 weeks 5 days with the same mono/di sharing placenta.  I'm having twin girls.  They said however that does not necessarily mean they are identical, only 70% chance.  So far my twins are measuring the same.  I do have to go in every 2 weeks for sono to make sure they don't develop twin transfusion syndrome.  

    This is incorrect. Mono/di twins are always identical.

     My girls are mo/di. They did not develop TTS, but did have unequal placental sharing toward the end that slowed one of the babies growth. They were born 1.5 lbs. apart, but are both healthy and thriving.

    Best wishes for a healthy and uneventful pregnancy!

    J - 9/6/09 L and A - 1/17/12
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  • AshleyJ0125AshleyJ0125
    I thought this sounded a bit off, too. My docs said they were 100% sure that our twins would be same sex identical and so did everything I read.
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  • MoDiSafetyMoDiSafety member

    Congratulations on your very special MoDi Identical Twin Pregnancy. Twin / Twin Transfusion Syndrome TTTS should not be feared. It should be Watched Out For, with Ultrasound every 2 weeks to look for Amniotic Fluid Discordance. There are a couple of Facebook groups i will give you links to, The first is MoDi Twins, populated by moms like yourself going through Monochorionic-Diamniotic pregnancy just like you. The second is for TTTS Hope & Connections, the Very Best Place on the Internet for information & support should such be required. All moms currently Pregnant with Mo-Di's & those that Just Aren't Certain of their Placentation are welcome there. You no doubt have some very good questions. We have excellent answers to them for you. Good Luck & God Bless.

    https://www.facebook.com/groups/MoDiTwins/

    https://www.facebook.com/groups/203496653079054/

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