My husband gave me a blessing that awful weekend right after we had been diagnosed and in that blessing we were promised that we would know what doctors to see and what medical procedures to do. When the Peri started talking with us, I felt comforted, knowing we were in the right place. I didn't know what the Lord had planned for us, but I knew the doctors we were seeing would help us through this medical crisis.
It'll be easier to call the boys by name. *wink* Greg was our recipient, the little swimmer that mooned us. David was our donor, the twin denied nutrients by a malfunctioning placenta. He was our guy that hardly moved because his amniotic sack was shrink wrapped around him.
Amniotic fluid is measured differently in twins then it is in singletons. In twins the tech measures the largest pocket of fluid from baby to uterin wall. For this pocket to count it can't have any limbs or cord in it. A five centimeter pocket is considered normal in a twin pregnancy. Greg had a nine centimeter pocket while I don't think Dave even had anything to measure.
For severe cases of TTTS, there is an option of in utero surgery. Qualifications differ according to the doctors that perform the surgery (and there's only five or six in the country) but most require the recipient to have a fluid pocket of over ten centimeters, the donor to have less then two centimeters and some also require heart problems in the recipient. The extra fluid can cause an enlarged heart and/or fluid around the heart.
We did not qualify for surgery, which was good. It meant my twins little 20 week old bodies hadn't been damaged by the twin to twin. Our options, aborting the pregnancy, tying off the donors umbilical cord so the recipient had a better chance, do nothing and go into premature labor because of the all the extra fluid and let our babies die or serial amnio reductions.
Serial amnio reductions??? I can't explain it, but I knew that's what we needed to do, even before I knew what it involved. The Peri explained, like an amniocentesis, amniotic fluid is removed from the recipients sack. The difference is a lot of fluid is removed. For some reason, sometimes the placenta works better once the pressure is taken off the donors sack. They siphon out as much as they can safely. This isn't a miracle cure, there are risks. Amnio reductions can throw a mother into premature labor. There's a risk of infection being introduced to the fetus. There's a chance of puncturing a hole in the membrane, causing cloudy fluid. If this happens you can never have the surgery. Also babies that experience serial amnio reductions have a 25% chance of having cerebral palsy. It doesn't cure the ttts, it only manages it.
Oh and the monitoring! Some women need reductions every few days, some women just once. Since this isn't a cure, the ttts can rear it's ugly head at any time becoming worse, literally killing overnight. We didn't know the future, my pregnancy wasn't even viable yet. We couldn't even think of the future at that point. Our very first goal was to make it to 24 weeks, so those babies could be viable.
We were given the option of waiting and seeing what happened for a few days before deciding on the amnio reduction. We spoke immediately, both of us at the same time, that we wanted it done right then. Knowing there was no chance if we didn't try the reductions made waiting seem like the craziest option ever. It was a lot to digest and while I can't speak for my husband, my thoughts were clear, I wanted my boys to have a chance. I needed to have the reduction done.
The Peri was a bit surprised we were so quick to go with the reduction. He got the bottles out, all the equipment, the tubing. It actually looked like he was setting up to make moonshine rather then a medical procedure. He was connecting tubes to glass bottles. I needed a constant ultrasound during the procedure. The tech would make sure the baby wasn't in the way and that the needle was in the right spot. When I got stabbed, they needed to siphon from the biggest pocket to make the procedure most effective.
The Peri used a smaller needle and realized after starting that was a mistake. He tried to not stress my uterus by taking fluid out slowly. I ended up with a four inch metal tube in my abdomen for over 20 minutes. Just for the record, a four inch tube stuck through your uterus while your uterus is contracting hurts!
They siphoned 2100 cc's of amniotic fluid out of Greg's sack. Uh, that's more fluid then a 2 liter pop bottle folks. Greg still had to much, his pocket was down to seven centimeters but he was in the way.
The most amazing thing, once that huge amount of fluid was gone, the pressure was let up off Dave and we saw him move his legs. Actually give some kicks, it was like he was free.
As I said, the reductions don't cure ttts, they only manage it. So we really were just at the beginning of a very long journey.
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