Quintero's Staging System for TTTS

TTTS has been classified into 5 stages by Dr. Quintero. The staging is not a great predictor of prognosis, however it helps monitor the disease progression. Everyone progresses differently, some people remain in Stage I or II and other people skip stages altogether.

Stage I: polyhydraminos(lots of fluid) in the recipient (Ursula), severe oligohydraminos(little fluid) in donor but urine visible within the bladder in the donor (Phoebe)
Stage II: polyhydraminos in the recipient, a stuck donor (meaning so little fluid that the baby can actually get stuck on the membrane), urine not visible within the donor's bladder
Stage III: polyhydraminos and oligohydraminos as well as critically abnormal Dopplers (at least one of absent (Phoebe did have this) or reverse end diastolic flow in the umbilical artery, reverse flow in the ductus venosus or pulsatile umbilical venous flow) with or without urine visualized within the donor's bladder
Stage IV: presence of ascites or frank hydrops (fluid collection in two or more cavities) in either donor or recipient
Stage V: demise of either fetus. This staging system was descriptive but had not been validated as prognostically important

Presently I am in Stage I, which is great news. I was in Stage II before I had the amnioreduction, but have remained stable since. Although I have had fluctuations with the Doppler's (heart flows), it luckily hasn't been serious enough to put me into Stage III. Yesturday, the intermittent end diastolic flow that we were concerned about Monday corrected itself, and ALL Dopplers were normal, thank GOD. However, my fluid is starting to increase in Ursula's amniotic sac again. Friday she measured the deepest pocket to be 6.7 cm, which was quite a jump from Monday. Dr. M keeps trying to reassure me that under 8 cm is normal and not to be concerned, as this increase could be the difference of the baby peeing right before the measurement was taken, which was true, because the bladder was very small.
But I can't help be worried, since to me, I just keep seeing the fluid accumulate...from 3 to 4 to 5, and now almost 7, which is pretty close to 8 if you ask me. I am NOT having the symptoms I had last time, severe shortness of breath, constantly emptying my bladder, and a hard belly. So I guess we just continue to wait and see.

It's been a long week, it definetly felt longer then 4 days between U/S's. But everyone coming to visit has really helped, and also the nice cards, and messages on facebook, and email have put a smile on my face, and the occasional tear in my eye. Please keep coming to visit, and PLEASE do not feel like you have to bring anything, I am happy to just have some company, that is what really helps the time go by.

I had a visitor on Thursday from another woman who had TTTS. She was diagnosed at 13 weeks!! She spent most of her pregnancy in Toronto, and had met with the Dr. who performed the laser surgery several times to discuss options, however she was very lucky and did not require surgery or amnioreduction. She was monitored 3x week initially, then twice a week and once a week towards the end. She was never on bedrest and delivered 2 beautiful little girls at the end of January at the IWK in her 36th week. One baby weighed around 4lbs and the other girl weighed 6 lbs. I really enjoyed meeting them all. I know that I have a lot of friends and family who are willing to listen to what I'm feeling, but talking to this complete stranger initially (and now my friend) really helped, because she's been through it. I really opened up to her, and told her my fears and my thoughts, and it was comforting knowing that she had the same thoughts when she was pregnant. So we'll definetly keep in touch...

Next U/S is on Tuesday...Have a good weekend