Did anybody deal with Twin to Twin Transfusion or Placental Share Issues?

[Fladdermus]

Our pregnancy doesn't seem to be going so smoothly any more (sorry, these are quite long):

http://www.storknotes.com/showthread.php?t=213016

and updated a few days later:

http://www.storknotes.com/showthread.php?t=213347


Is there anyone here who can relate - positive stories greatly appreciated :)

[Sheryl]

I'm so sorry you are going through this, how scary!

My sister had TTTS with her twins 11 years ago. I forget how many weeks she was when it was diagnosed. At the time the laser surgery was very new and the closest place for her to have it done was in NY. Luckily she didn't end up needing it. She did have to have some amniotic fluid removed from one of them because he had too much. The wonderful news is that they were born healthy at 36 weeks. They were 4 lbs and 6 lbs, so a very big difference in weight. To this day he is still bigger, always has been! I wonder now if it could of been because of her eating more protein like you had said. We were all praying so hard for them and believed that is why they were both born healthy.

I hope this helps you a bit knowing that her babies survived through this as well. You and the babies our in my prayers, please keep us updated on how you are doing.

Here is a link to our cubby on TTTS:
http://www.storknet.com/cubbies/multiples/ttts.htm


If you ever need anything, please let me know. We are always here if you need some support.

((((((HUGS))))))

[Sheryl]

I just wanted to link to the updated post, so everyone can read.

http://www.storknotes.com/showthread.php?t=213347

[Fladdermus]

Thanks so much Sheryl. Were your nephews healthy in every way - no long lasting effects of the TTTS? It's encouraging that your sister managed to get to 36wks, especially 11yrs ago when so much less was known about the treatments for the condition.

And, wow - you must be a pretty fertile family, you with triplets and your sister with twins :p LOL!!

Anyway, just hoping we get a clearer diagnosis on Wednesday. I'm beginning to wonder actually if I have both conditions????:(

(Oh, and I edited the link to my update in my original post, didn't realise I'd posted the same one twice!)

[nj teacher]

i dont have any experience with ttts, but our twins had extremeley discordant sacs at our 10 week u/s. the perinatolgist gave the twin with practically no amniotic fluid a 50% chance of making it.

at out 13 week u/s, the sacs had evened out. i'm not sure what happened - miracle maybe?

our twins are fraternal, so i'm not sure if the situation is even relative, but i wanted to give you some hope that things can work out!

[Sheryl]

Yes they were born totally healthy. The bigger twin was only in the NICU for maybe 4 days and the smaller one was in for a week, only because at the time they had to be at least 4 lbs in order to come home and of course babies always lose a few oz after they are born so he had to gain it back. They have no effects due to the TTTS. They both have asthma and a severe nut allergy but I don't think that can be blamed on the TTTS.

Oh and yes that is why I'm afraid to have any more babies, I'm afraid quads will be next :eek: My sister has identical twins, well obviously as you know. But my girls started out as fraternal twins and one egg split, so I have 2 identicals and a fraternal. But they say identicals aren't hereditary. Since mine started out as fraternal twins I have a "tendency" or whatever the Dr called it to drop more than one egg at a time, scary! I always wonder if they will one day find research that identicals can be hereditary too, I just find it such a coincidence that my sister and I both have a set of identicals. OK sorry for going off there!

[GabbyBlair]

Fladdermus,

I'm so sorry you and your family are experiencing such a scary, unpredictable time. However, there is hope! My girls were diagnosed with TTTS at 18 weeks. At first, my peri took a "wait and see" attitude. We had bi-weekly non-stress tests and weekly ultrasounds and watched them very closely. I was put on bed-rest and medication at 29 weeks and we made it to the day I turned 34 weeks. They were 4 pounds, 1 ounce and 6 pounds, 2 ounces. Blair (the smaller) was in the NICU for 18 days ~ never on the vent but had problems eating and maintaining blood pressure. Gabby was only in for 8 days, but she was on the vent for 2 of those days.

If you would like/need any more information, feel free to PM me. I know the diagnosis is a scary one. I was honestly petrified (especially after getting more information and statistics). I was told to rest and eat as much as possible ~ I was on 3000 calorie a day diet.....I think it helped!

My girls are now almost 7. Gabby is bigger than Blain ~ about 1 inch and 8 pounds or so. However, the are both completely healthy. I know how blessed we were/are. I'll be thinking of you during this difficult time.

[Fladdermus]

Thanks ladies!

NJ teacher - I had no idea you'd had such a problem at 10wks - that must have been so worrying for you. What a miracle that the situation righted itself by 13wks though!!!
I hope you're doing okay on your bedrest now - as difficult as it must be - I've been following your story and have been thinking about you. I hope those little ones of yours stay safe and cosy in your belly for quite some time to come :)

Miranda, thanks for sharing your experience. Was there a lot of size difference between your girls while still in the womb? What worries me is that there is a 50-60% discordance between my girls (depending on which u/s technician takes the meaurements) and I just can't imagine the littler of the babies ever catching up or getting even close to it. She presently weighs half of what she should at 20wks which I just find so disheartening :(
Did you have any of the medical treatments which are common whith TTTS - amniotic fluid removal or laser treatment? The doctor I saw last week said that they would go straight to laser treatment if he does decide that it is indeed TTTS - all sounds so scary though. I've been trying to eat lots, but I have had no appetite whatsoever, so even that is difficult.

Anyway, thank you again for sharing your positive story - I know there is hope :)

[katyasmommy]

I dont have any experience or storries to share, just wanted to let you know you and your babies are in my prayers. Try to stay positive, we're all rooting for you! ((((hugs))))

[GabbyBlair]

Fladdermus,

I honestly don't remember their size discrepancy ever being more than 30-40%, but they were born with at least a 50% discrepancy (4lbs. and 6lbs.), so they may have underestimated their discrepancy in untero. I know at my 16 week ultrasound things were beginning to look a little suspicious. I think at that time B was just barely measuring in the low/normal range. Whereas G was measuring a little large for dates. I was specifically told that Blair would never catch up with Gabby...that what we were looking for was a slow down in the discordance ~ not for Blair to catch up because it would never happen.

We did discuss the laser treatment for the girls. My peri was ultra cautious and only recommended it as a last resort (he said the dangers are still so high). Thankfully it didn't come to that.

I totally understand the no appetite thing as well. As the babies grew, my appetite diminished completely. I would literally cry when DH or my mom would bring me food (every 2 hours during the day ~ 3000 calories is a lot!). But, I tried to eat most of it anyway. I know you are going through a horrible time. Please know that you are not alone!

[Hop Devil]

I don't have experience with this, but wanted to wish you positive thoughts and all the best.

[Sheryl]

How did you make out today? I hope you learned a more definate prognosis. Please update when you get a chance.

((((HUGS))))

[carrins1]

no experience, but I want to tell you I am rooting for you all!!
Sarah