My SIL has TTTS . . . lots of ?'s

My brother and his wife are expecting ID twin girls. She is 27 weeks and 5 days along. She was in the 2 weeks ago for contractions and the found out that baby B was quite small compared to baby A. They thought it was due to improper placement of the cord in the placenta, but today she got admitted and they diagnoised her with TTTS. They are hoping to keep the babies in till 32 weeks, but that is on the very hopeful side. Most likely it will be sooner since baby b has almost stopped growing. They removed 600mL of amniotic fluid from one baby today. I think that might buy her a bit of time. Has anyone else gone through TTTS, along with fluid removal? How much "time does it buy?" At what point do you consider surgery? We live in MSP, MN, is there anyone here that does fetal surgery? I have only heard of the two or three big names. Oh, also, they called it stage 1, which I know is good - but what does that mean?? Thanks for your help!

 

Amy! How scary for your family!

I know that Eric Barr is the resident expert here. You might want to PT him and get some suggestions. In the "experienced members" sticky/list at the top of the HISN forum there is a list of members who have experience with TTTS.

I hope you get some answers for her and she is able to carry them as long as possible!

 

Please check out this website as well. www.TTTSfoundation.org We had TTTS with our boys and it is a wealth of info. We also went to Dr. DeLia who recommends bedrest and drinking Boost or Ensure with extra protein. If you call him, he is more than willing to talk to any family member with questions about the disease. IMHO, he was the most caring Dr. I've ever met and we're still in touch.

(edited to give Dr. DeLia's web info) http://www.wfhealthcare.org/stellent/group...cov_014263.hcsp

 

Wow, how scary...definatly have her call Dr. Delia, hes a great man and takes the time to talk to anyone who needs help in a twin pregnancy. He gave me great advice and helped me push the doctors when we started dealing with growth discordinace.

Im glad she was admitted to the hosptial for monitering

I will keep her and the babies in prayer

 

Some good advice has already been given. First of all, it's great that she's as far along as she is...that gives the babies a good chance. By the time my TTTS was actually diagnosed I was already at a Stage 2, probably 3 (5 is death). I believe stage one is mainly a big difference in fluid levels, but the bladders are still visible in both babies. If they only removed a little over half a liter of fluid that's good too. I had an amnioreduction, removing about 2 liters of fluid (about a gallon!!). My TTTS was so advanced that it was too late and we lost our girls. I don't think surgery is done past 24 weeks, because the risks outweigh the benefits at that point. Maybe 26 weeks is the cut-off...not sure. It's great that she is in the hospital and hopefully they'll monitor her closely. Are they doing doppler flow studies?

Definitely contact Dr. DeLia!! I'll be praying for them.

 

quote:
Originally posted by Raneysmama:
I had an amnioreduction, removing about 2 liters of fluid (about a gallon!!). My TTTS was so advanced that it was too late and we lost our girls. I don't think surgery is done past 24 weeks, because the risks outweigh the benefits at that point. Maybe 26 weeks is the cut-off...not sure. It's great that she is in the hospital and hopefully they'll monitor her closely. Are they doing doppler flow studies?

Definitely contact Dr. DeLia!! I'll be praying for them.


I am so sorry about the loss of your girls, how heart breaking. Thanks for sharing your story.

Thanks for the info about the cut off for the surgery, I didn't know about that and it's very helpful to know!

My Dad actually talked to a co-worker today who had girls with TTTS and Dr. DeLia took care of them - and he gave my dad his info too. So we will probably contact him, but it looks like everything that can be done is being done.

Yes, Amy is having dopler flow studies - twice a week.

The plan is to send her home from the hospital this evening after she gets her second dose of betamethasone. NOt much more they can do for her in the hospital that they weren't already doing out pt.

Thanks for all of your concern ladies, it means a lot!!

 

I'm so sorry your SIL and brother are having to go through this. Every case of TTTS is different but what's so important is that they diagnosed it and that helps a lot. Your SIL is also 27 weeks already and still at stage 1 and that gives the babies a wonderful chance. We were diagnosed at 19 weeks and received two amnioreductions, one that first day and another at 25 weeks. Both removed a TON of fluid from Baby A. We actually ended up carrying to 35.3 weeks so our case ended up very successfully. Some things that helped me were to eat a lot (I was never hungry because I wanted to make sure Baby B got as much as she could), sip 2 high-protein drinks every day, drink bottles of water, and lay down on my left side as much as possible. I watched a lot of TV on my side while snacking during those 16 weeks. We had ultrasounds at least once a week to check fluid levels and doppler flows and then they measured the girls every 2 weeks. We also had NSTs twice a week from 28 or 30 weeks onward. Baby B's growth slowed the entire time but it didn't stop entirely until 35 weeks. When the girls were born, Sierra was tiny (3 lb 15 oz) but perfectly healthy. She spent 7 days in the Special Care Nursery until she proved she could eat and grow. Ainsley (5 lb 5 oz) had Respiratory Distress and was on a ventilator for about 4 days but was out of the NICU in 9 days. Once they were discharged, both girls were as healthy as can be and they've never had any side effects from their tough time in the womb. We'll be keeping your family in our prayers!

 

Great advice given. So glad there is so much info about TTTS now than there was 8 years ago...(see siggy).