TTTS stage 2

[ntl]

I went in for my 20 week scan Monday and was diagnosed with stage 2 TTTS with my mono di twins. Twin A is measuring on target and had 10mm fluid. Twin B is now 1.5-2 weeks behind and had 0.7mm fluid and no visible bladder. Obviously I am heartbroken and shattered. I have a consult with UCSF tomorrow - ultrasound, appointment and echocardiograms. I think the tentative plan is surgery Thursday, assuming they/I qualify. Everything was perfect
2 weeks prior.

My sister lost her mono di twins to TTTS at 21.5 weeks. Of course her scenario wasn’t exactly like mine, and I could have a completely different outcome, but I’m still anxious/devastated/have major PTSD. I was there for the delivery and she had complications afterward and it was extremely traumatic for everyone. This was 6 years ago so hoping there has been some advancements and that perhaps stupid luck will be on my side.

I truly cannot handle any other stories of heartbreak but will take any words of encouragement or happy endings. Please no horror stories about UCSF - it is where I am referred by my MFM and I don’t have the mental capacity to research and fight for alternatives. I am hanging on by a thread, trying to arrange childcare for my other kids and bracing myself for worst case scenario while trying to remain positive and cling to hope.

 

[yi_jun_sung]

@ntl My mono-di boys had stage 3 ttts at about 22 weeks. They weren't able to get the laser surgery because their cords were too close together. My wife had an amnio reduction done. After a couple of weeks they showed no signs of ttts. They were born 3 weeks ago at 34 weeks + 3 days. They are happy and healthy. I know this time is stressful. We were fully prepared for them to be delivered extremely premature. Luckily that did not happen. The best advice I can give is not not give up hope.

 

[b429]

@ntl Sorry you are going through this.I had stage 2 TTTS and couldn’t even walk or sleep due to the excess fluids pressing against my organs. I had to have emergency surgery the next day at 18 weeks.I hope all goes well with you. If it gives you any hope my boys are 3 years old now.

 

[english_episcopalian]

@ntl We had a very rough case of TTTS. An 11 out of ten, as our MFM described it. The surgery wasn’t a total success, and we did have to deliver super early at 27 weeks.

Anyway, the twins are sitting beside me now 5 years later and eating their breakfast to get ready for the school day ahead, and their swimming lesson later. They are completely normal, happy, healthy little ones.

Sometimes it feels like all possibilities lead to disaster, but it’s not always true. If you told me about how things are now, five years ago, I simply would not have believed you.

 

[pagiel]

@ntl So sorry you’re going through this. I know how scary and stressful it can be.

We were 18 weeks and went to our regular MFM appointment and were diagnosed with TTTS. A was measuring a week ahead and B was a week behind in growth. There was no fluid for B and they were described as “Saran wrapped” B was showing some strange blood flow and it looked like it was already at stage 3, despite a perfect appointment just 2 weeks prior.

We were immediately referred to a hospital for surgery and started a 5 hr drive right then while my dr called to set it up. When we arrived they did another sono and decided that it looked like it was only stage 2, but because of positioning & an anterior placenta, there was a chance that they wouldn’t be able to complete the laser ablation.

They decided to let me sleep & do the surgery first thing in the morning. After the surgery, we were told that I had turbid fluid (so low visibility) & they had to rupture the membrane separating the twins to they went from modi to technically momo. They felt they had gotten about 90% of the laser ablation done and then it was a waiting game to see how baby B responded.

It was absolutely terrifying after that. I saw my dr weekly for checkups and every time they felt B wasn’t growing as much as they had hoped. But suddenly at week 4 after the surgery, they had gotten back to the 40th percentile and were no longer growth restricted!

Since they they have continued to catch up & have looked amazing at every appointment. We’re currently 27+4 and they are so strong!

It can be so scary in the moment, but things have come such a long way. We had everything against us in the surgery, and they still are doing amazing.

Sending all the love to you in this tough situation.

 

[jerrhhhhli]

@ntl I was in stage 2 TTTS! First diagnose was at 13weeks, but they weren't sure whether its TTTS, IUGR or both.

In the end, it was both. IUGR being the preliminary problem. I was very close to stage 3 TTTS from 22weeks until birth, but never fully qualified and due to the IUGR they decided the risk for twin B is too big for surgery. Twin B might actually be dependent on the TTTS, which effects might have counteracted the IUGR. It was weird.

To tell the happy side: we made it to 32+4 weeks, had a very uncomplicated and nice c-section, stayed close to 40 days at NICU and have two healthy, wild, cheeky, beautiful daughters at home and apart from twin B being a bit smaller and slimmer, you do not see anything. They'll turn 3 in August.

PM me any time

 

[cedarchest]

@ntl I was originally diagnosed stage 1 ttts but also weren’t sure if it was iUGR. It ended up being iugr but never going into stage two of ttts. Twin a was under the 1st percentile with bad blood flow and stayed at about 2cm amniotic fluid. Twin b had over 10 cm amniotic fluid and was over the 50th percentile in growth. I was told my whole pregnancy they wouldn’t make it and it always felt like doom and gloom. I was prepared for a very early delivery. I ended up making it to 34 weeks exactly! They both spent about a month in the nicu and are now 3.5 years old, happy, healthy and thriving! Twin a is still very small in comparison to her sister but that’s okay! I am praying for your family during this extremely stressful time.