Diagnosed w/TTTS (Twin Twin Transfusion Syndrome)

bonk2448 · January 2009

Had our anatomy scan yesterday and the babies have an 18% difference. We are going in for one more scan on Friday and most likely up to the Fetal Care Center in Cincinnati on Monday for treatment. Anyone else have experience there? It is scary but we caught it early and there is a treatment!!!

SNL0605 · January 2009

oh no! Im so sorry. Praying for a fantastic outcome

I believe there are a few MoMs here who have experience w/ TTTS

BelleBaby · January 2009

You're going to Cincinnati Children's? I work there! I know one of the docs that works in the FCC and he is awesome. Everyone there is. Your babies will be in great hands.

MetalMonkey · January 2009

I hope things go well for you. I would page Sweater; she experienced this as well. I'm sure she would be a wealth of info/support.

mmbench · January 2009

We were diagnosed with it at 24 weeks when the girls had a 25% difference. With a high-protein diet and strict bedrest, the girls stabilized and were born at 34w. Lily was 2 lbs 13 oz, and Maddie was 4 lbs 9oz.

The fluid situation never got that bad with us, so we were never referred elsewhere for fetal surgery.

Best of luck to you!

MrsARC1105 · January 2009

No experience, just wanted to wish you good luck and keep us updated.

caseybog · January 2009

Best of luck!!

jlc071903 · January 2009

Best of luck...they THOUGHT my girls had this,b ut it ended up that we didn't. Keep us posted!

pea-kay · January 2009

good luck! that's scary, but they can do so much nowadays.

jasonlovessara · January 2009

best wishes... it is good to see that they are in such good hands!

april062604 · January 2009

i'll keep you in my thoughts and prayers. ?i've heard some great success stories and i'm sure you'll be one of them too.

sweater · January 2009

Hi there - my twins had TTTS, but we had a bit of a different situation since they were mono/mono. We couldn't see a difference in amnio fluid since they were in the same sac, and we couldn't have the laser treatment since their cords were only centimeters apart on the placenta (the veins between them were too thick and couldn't be severed).

In my blog I kept a record of their gestational weights and the percentage difference between them. The main thing that caused one of babies to be much smaller was a hard knot in his cord from the mono condition.

They have a great success rate with treatment, but if you don't do the surgery, pp is correct. Lot's of protein and get off your feet!!!?

HisLobster · January 2009

I have no idea, but wanted to wish you good luck.

aprilbaby4 · January 2009

I had the surgery- but with Dr. Qunitero in Tampa. My boys were had a 32% (1lb) weight difference before surgery and a 4oz difference when they were born.

If you want to talk you can email me at aprilbaby04@gmail.com. I also drank a lot of ensure (4 a day) and was on strict bedrest (but that was mostly due to a shortened cervix).

missuscooley · January 2009

Hi there - I too was diagnosed at 18w and had a ">20%" difference. The doctor that diagnosed me practically had me on the next flight to Orlando and I was scared to death! After talking with my regular doctor seeing a MFM things became much clearer! I went on modified bedrest, no work and drank 3 Ensures/day. I got weekly ultrasounds/measurements and sometimes 2x a week if the drs wanted.

I was induced at 36w 5d and had very healthy baby boys. They were 4lb10oz and 5lb5oz and had zero NICU time.

Let me know if you have any more questions - I know how you feel right now.

Stay positive and best of luck~mandi

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