TTTS and laser surgery

Hi, I am currently 23.5 weeks pregnant with identical twins girls. I went into preterm labor yesterday which they stopped and got a positive fetal fibronectin test. They sent me for an u/s and they have just discovered our girls have stage 2 TTTS. They think the large amount of extra fluid in Twin B's sac is causing the labor. So far they are very healthy but twin B has almost all of the amniotic fluid and twin A is currently stuck. The doctors want to do laser surgery on the placenta to try to correct this problem on Tuesday before it gets worse and before any medical damage is done to either twin. I am dying to hear stories of anyone who went through this, what routes they took and what their outcomes were. I also want to know what stage your TTTS was at. Any info would be greatly appreciated! Thanks in advance.

Kristin

 

I do not have TTTS experience, but I want you to know that you are in my thoughts and prayers.

:hug99: ,
Heather

 

Kristin, I'm sorry I don't have any advice either. :hug99: Just wanted you to know that I'm hoping the best for you and your little girls. Please keep us updated on how things are going.

 

Have you contacted the TTTS Foundation? The website is http://tttsfoundation.org/. Mary, the founder, is wonderful. I'm having mono/di twins so I contacted her to find out more about my risks and she wrote me back immediately. she will send you information, a list of doctors who do the surgery, offer you advice, and put you in contact with other women who have gone through the surgery. They have a message board, so I would post there also. Good luck.

 

Hi Kristin, Sorry no experience with TTTS here either, but I hope it all goes well. Please keep us posted. :hug99:

 

Kristin,
I am pregnant with mono/di boys, and we have been in stage 1 TTTS since 21 weeks. I've had PTL and a cerclage. I haven't had laser surgery or the amnio reductions. We have had close monitoring, and I've been on bedrest (at home, now in hospital) since 21 weeks. Our donor has had fluid as low as 1.something cm, but now it is at 5 to 6 cm consistently. Our recipient has extra fluid (11 cm approx.) and is est. to be a lb. plus larger than the donor. But they are still baking. . .

I am amazed at the surgery stories I read. I too would recommend getting in touch with Mary and Dr. DeLia from the TTTS Foundation. I spoke with both of them about my case too. If you haven't, check the message boards also at the Foundation's website. . . you'll get lots of info and personal experience stories from the folks there.

Thinking of you and your girls. . .

 

I'm sorry to hear about your diagnosis, but there is so much that can be done now. My ID twin girls were diagnosed at stage III at 20.3 weeks. I had the fetal laser surgery the very next day with Dr. Chmait in Los Angeles. I'm am now 29 weeks and our babies are doing amazingly well. Our recent echocardiogram showed that both their hearts were doing just fine whereas the recipient was beginning to show signs of thickening before the surgery. When we went for the surgery the recipient had over 9 cm of fluid and the donor didn't even have a measurable pocket or visible bladder. 24 hours after the surgery we could see a visible bladder in the donor and within 3 weeks after the surgery the fluid levels between both babies were nearly equal and their weights were within 2 oz. of one another.

I would also reccommend contacting Mary at the TTTS foundation and if you haven't already to start drinking some high protein shakes.

 

Sorry to hear about your diagnosis. Definitely go to the TTTS Foundation website and contact Mary, also go to the message boards and ask for help - the women there will help you too. Also, get in contact with Dr. Delia and Dr. Quintero - they will help you even if you are not their patient. Dr. Delia, specifically, will call you as soon as he gets your message and talk to you.

We got diagnosed at 18 weeks, and I went on bedrest and drank 3 Boost protein shakes per day - within 2-3 weeks the fluild levels and dopplers were within normal range. We started out with my donor twin having no fluid, and absent end diastolic flow in the doppler (I think this makes us stage 3 - although my recipient had only normal, not excess fluid). We were very lucky to have our TTTS stabilize with only bedrest and protein shakes. I would have done the surgery in an instant if it had not stabilized. We were monitored weekly and delivered at 38w4d - the babies were small but healthy. It is possible to treat this. Get multiple opinions if you can!

There are MANY women on the TTTS foundation message boards that have had successful laser surgeries and have many successful stories. I also have a friend IRL who had the surgery and her babies are now 20 months old and doing great. I can have her write you an email as well - PM me your email addy.

I hope your surgery goes well on Tuesday - i will be thinking of you - it is such a great procedure!

Jenny

 

I just want to thank all of you for your thoughts and prayers as well as all the info. We went ahead with the laser surgery on Wednesday and the girls are doing GREAT! 12 hours later Twin A had a huge bladder and 24 hrs after that she now has 3.5 cm of fluid. We are so releived and greatful to our wonderful doctors. They also removed over 4 Litres of water from Twin Bs sac and I am now 9 lbs lighter and feeling so much better. The girls couldn't be doing more wonderful. Thanks so much. I will be getting out of hospital shortly and then on some bed rest to keep an eye on any preterm labor but other than that things are great.
Kristin

24 Weeks 2 Days with Identical twin girls
Mom to Brody born Sept. 9, 2005

 

Congratulations! I'm so glad to hear everyone is doing well.

 

Glad to hear it went well, keep up the awesome work!
I cannot remember for the life of me what stage the boys were in, but I had no surgery. Just steroid shots and was on hospital bedrest since week 22.

 

Kristin, this is wonderful news!! I'm so happy the surgery was successful. I hope the rest of your pregnancy is happy and uneventful! :hug99:

 

I'm happy to hear that things are going so well.

 

Kristin, that is great news! I'm so happy things are going well!