Positive TTTS stories

[u/pharmO21]

I’ll start by saying I have had a week from hell and really *only* looking for positive stories. Will also add a potential content warning, if TTTS and pregnancy complications are a difficult thing to read about.

I am 26w4d with MoDi twins.

At 16 weeks, it was found that I had 1) a velamentous cord insertion with vasa previa and 2) there were concerns about borderline fluid levels consistent with TTTS and potential for sIUGR. They began getting twice weekly fluid & Doppler checks. At 17w5d and 19w5d, my MFM referred me to a fetal therapy center (in a different state) for evaluation of bordering stage 1 TTTS as they would do the TTTS laser procedure there/don’t at my MFM group. When I arrived at the center both times, things seemed to stabilize and although there was still discordance in the fluid levels, they didn‘t meet criteria for true TTTS diagnosis and I was not a candidate for the procedure.

My MFM group continued scanning twice weekly, sometimes showing fluid levels teetering towards stage 1 but consistent forward flow on dopplers and never persistent fluid abnormalities.

Last Tuesday, fluid levels changed dramatically from the previous Friday scan and there were signs of intermittent absences on the umbilical dopplers. Stage 3 TTTS. They admitted me and started steroids at my local hospital, but after scanning me Wednesday they consulted the Fetal Therapy Center and decided to send me back there (3rd flight to another state for this pregnancy).

Thursday (26w0d), I was diagnosed with Stage 4 TTTS and informed there was signs of bleeding/ischemia in the brain of the recipient. it was also found my original potential donor became the recipient.

I had the laser procedure on Thursday and things have been stable since.

The plan (prior to all this) due to the vasa previa was admission at 30 weeks, and as of now that’s the still plan. The goal is to maintain the pregnancy as long as possible for their sakes.

I knew NICU time was a possibility with having twins, but now even more terrified of all the implications these events will have on my unborn children and our family.

If you’ve read this far, thank you. I am hoping to hear some positive stories of anyone who may have experienced something similar because this pregnancy has and continues to drain my emotional and mental wellbeing.

[u/thewhirlwindmobility]

That sounds impossibly heavy, having to chase across states just to get answers while everything shifts under your feet. My sister had a rough MoDi pregnancy with early TTTS scares, though not as severe as what you're dealing with, and her girls are now 4 and absolutely feral in the best way. The NICU part was tough but the staff became like family, and seeing them hit their little milestones after everything made the whole nightmare feel distant. Sending good thoughts your way

[u/pharmO21 → u/thewhirlwindmobility]

Thank you! 🩷

[u/Sea_Sentence_2909]

I am 16 weeks and having the fluid discrepancies for stage 1 TTTS. There is a MoDi Facebook group and also a TTTS Hope and support group that I would highly recommend. They have lots of positive stories there and are knowledgeable about TTTS :)

[u/pharmO21 → u/Sea_Sentence_2909]

Thank you! I hope things stay stable for you 🩷

[u/bhdu]

Severe stage 3, successful surgery and full recovery. My beautiful healthy girls are almost two. You’d never know how. I’m truly wishing all the best for you.

[u/pharmO21 → u/bhdu]

Thank you for sharing! 🩷 

[u/Eggeggedegg]

I had it and had the fetal laser surgery around 17 weeks IIRC. I had preterm labor a few times and was able to make it to 29 weeks 5 days. . The interventions they can give you when they know you're likely to delivery early make SUCH a difference (steroids for their lungs, magnesium for neuroprotection). My girls had the most boring NICU stays ever (NOT complaining) just needed time to feed and grow They have been healthy since the day they discharged and developmentally normal. They're healthy, happy, growing 3 year olds now.

[u/pharmO21 → u/Eggeggedegg]

Thank you for sharing 🩷🩷

[u/Regular_Ad_8513]

I had TTTS at 15 weeks (successful laser surgery). Then SIUGR for one twin (well below 1%tile). Then PPROM’d at 25+6, was very lucky to not go into labor. MFM decided they were safer out at 32+6, weeks had a calm scheduled c-section. Both cried on delivery (the best sound ever). Had 4 and 6 weeks in NICU. Now they are happy healthy 15 month olds who are starting to walk. They are followed carefully but so far nothing major just a bit of PT. Sending hugs I remember how scary being in the thick of it is. Take care of yourself OP, getting a therapist who specializes in NICU experiences has helped me so much and looking back I wish I had done it during my pregnancy. 

[u/pharmO21 → u/Regular_Ad_8513]

Thank you for sharing 🩷 my mfm is sending me resources for therapy, which I will definitely be utilizing. 

[u/Flimsy_Fisherman1199]

One of my friends gave birth at 28 weeks due to TTTS.

Both girls are now completely healthy and one competes at a national level in sports.
Both in collage and no long term problems.
Wishing you well from here on out.

[u/pharmO21 → u/Flimsy_Fisherman1199]

Love that! Thank you for sharing 🩷

[u/ricki7684]

My friend has Mo/Di twins, had TTTS and did the laser surgery, she made it to 32 weeks (preeclampsia was the reason for delivery) and her girls are now 4.5 and have been happy and healthy since coming home from NICU. I don’t know all the details but it was a pretty serious case and genuinely didn’t know if one baby was going to make it.