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BFP #2 - 12/9/09 After being on bedrest for 10 weeks due to TTTS and hospital bedrest for 4 weeks due to PPROM, my sticky babies are here! Born at 32 weeks!!
Twin-to-Twin transfusion
Does anyone here have any experience with twin-to-twin transfusion syndrome? I'm going in for an u/s with the peri tomorrow morning because one baby is measuring a week and a half ahead of the other.
Of course everything you read online is grim and I was just wondering if anyone here has any experience with the treatment or outcomes.
Any advice would be greatly appreciated. Thanks!!
BFP #2 - 12/9/09 After being on bedrest for 10 weeks due to TTTS and hospital bedrest for 4 weeks due to PPROM, my sticky babies are here! Born at 32 weeks!!
This discussion has been closed.
Re: Twin-to-Twin transfusion
I am monitored for TTTS twice a month. My twins are mo-di and one of them has velamentous insertion which is common with TTTS. However, they are exactly the same size. An MFM at my office who is a TTTS specialist says that TTTS usually develops between 16 and 20 weeks. I was told we have a 15% chance of them developing it but they think I'm out of the woods now. The size difference isn't the only factor for TTTS, its also amniotic fluid levels and blood flow. The u/s tomorrow will look at all of these.
Please stop reading the internet. There are treatments that will work for you. Those that can perform the treatments are not easy to find, but any good MFM can help you find one. There are 2 MFM's in my office that specialize in laser treatment with high success rates.
Step away from the internet and I hope tomorrow you will get some good insight into what is really going on and what the next steps are.
Steal my kids picture or pretend they are yours, I will find where you live and ship all of their dirty diapers to your doorstep. Promise.
I was diagnosed with TTTS when I was 20 weeks. Both boys were about the same size but the amniotic fluid levels were quite different. My specialist in Boston immediately told me to drink 3 Boost high protein shakes a day and monitored me until 22 weeks when we couldn't see baby B's bladder. He did an amnioreduction and took out about 2 liters of fluid from baby A. That in combination with the Boost supplements seems to be working well because I'll be 26 weeks on Friday and things have slowly started to equal out.
The main things to be concerned with are the growth of the babies, their doppler blood flow studies which they should be doing on you each time you are scanned, and if you can see a bladder on both babies.
It's a scary syndrome especially since the statistics out there are so grim but just take things one week at a time. If you have any other questions please feel free to contact me. (herman184@hotmail.com) It helps to talk with others who have been through treatments!
Good luck!
I didn't find out I was having twins until 20 weeks, and by 24w I was diagnosed with TTTS. The bladder was still visible, however, so I was put on immediate bedrest with the protein shake supplements and things stablized. They were born at 34w. Donor was 2 lbs 13 oz, and recipient was 4 lbs 9 oz. They're 4 now and doing fine.
Littlewonders isn't on here much, but she flew to TX to have the laser surgery and now has two beautiful girls.
If you're followed closely and able to get the right care, there is hope.
I found out at 18 weeks I was having twins and at 19 weeks that they had TTTS. We tried protein drinks and amnioreduction but it didn't help. I flew to Texas for the laser surgery and it was very successful for us. I ended up being induced at 34 weeks because we were seeing signs of reverse TTTS. My babies were only 4oz apart in size at birth and perfectly healthy. There is so much hope for TTTS babies esp those whose diagnosis is made early. It sounds like you are being monitored closely which is awesome.
It IS a scary disease but its not a death sentence. There are so many survivors now with the different treatments. My drs always emphasized that it was the fluid levels first that lead them to TTTS- not a size difference. Did they say what your fluid levels were?
OMG, ladies.... we should start a support group here for MoM battling TTTS. I had a horrible day Monday b/c of all this. 2 weeks ago they noticed that Baby A had a bigger amniotic sac than Baby B, but Baby B still had a normal size sac AND they were both measuring the same size (7.5 oz). They sent me off to a high risk pregnancy doctor Monday to confirm the results and yes, Baby A still has a slightly larger amniotic sac, but they are measuring at 12 & 13 oz so roughly the same size. That in itself will get me through the week as I will be going to see the high risk pregnancy doctor once a week now.
the doctor told me EVERYTHING on Monday and scared me to death. i know it's his responsibility to make me aware of what could happen, but i was so upset. they don't even know if i have TTTS yet.
it's nice to see that others that have gone through have positive stories. i have not gone to one single internet site to read about the syndrome. i don't want to make myself a nervous wreck.
please keep the positive thoughts coming!!!
Hi Jstar- I'm at Beth Isreal and my high risk preg physician is in Brookline (Dr. Cohen).
Your story gives me hope for all those out there with TTTS. Why did they make you drink high protein shakes? Is there an email I can contact you at?
Hi Chicwed,
I'd be happy to chat. my email is herman184@hotmail.com. The protein shakes are a new treatment that they are looking into and seems to be working for many people. My husband and I contacted Dr. Julian de Lia in Milwaukee (he is big in TTTS research) and spent about an hour on the phone with him. He was fabulous and recommended the Boost shakes as well as my doctor (dr. Robinson, also fabulous!) at BWH. If you have any question of TTTS I'd suggest drinking them. No the best tasting but if it works, it's worth it! Feel free to contact me. I'm happy to chat and help in any way I can!