Twin Anemia Polycythemia Sequence

Our follow-up ultrasound in Ann Arbor was this morning. We expected just a quick look at the girls, their bladders, their fluid levels, and their bloodflow, and to drive back to Holland. Our appointment ended up taking over four hours, and we don't know if we're going to make it back home tomorrow night or Friday...

We were ecstatic during the ultrasound not only to see two beating hearts, but to see two bladders! In addition, Baby B's fluid levels have tripled from last ultrasound (not quite in the normal range yet, but much closer. We didn't expect everything to be "normal" yet, so we were so happy with this!) When they were looking at the bloodflow patterns through each baby's brain, we noticed that when they measured the velocity of bloodflow, there was quite a difference between baby A (in the 60s) and baby B (in the teens). This wasn't a value to which our attention had ever been drawn in the past, so while we thought it was weird, we didn't think much of it. We were just happy, again, to see improvements in their bladders and fluid levels.

When the doctor came in (the same doctor who did our initial consultation), she said she had good news but also some concerns. The good news she shared with us was what we already knew... Baby B's bladder was visible, fluid was increasing, and the amount of fluid around Baby A remained in normal range. Awesome! Her concern was the speed of the bloodflow through the babies' brains. Baby A's  was quite high for her age, which signifies she is likely anemic due to not getting enough blood, and Baby B's was pretty low, which says she is polycythemic getting too much blood. In addition, Baby B's liver looks "different," which possibly means that she is now being overloaded with fluid. Hmm, sounds kinda weird, since before our surgery Baby A was getting way too much blood, and Baby B not enough. To make sure she had the numbers right, she scanned us herself and confirmed that it was a concern.

We waited for what seemed like forever to meet with her to discuss the implications of this new concern (and found out that she had been consulting with some of her partners, including the doctor who did our surgery last week, which is why we had to wait.) Basically, what they believe happened is that there were one or more blood vessels that were not seen during surgery that began to shunt blood in the OTHER direction once the other connecting blood vessels were coagulated. This was a risk we were aware of, since not all blood vessels were visible to the naked eye, even with the special camera equipment they were using. This condition is called TAPS (Twin Anemia Polycythemia Sequence). It can happen spontaneously with TTTS, but it more often happens after laser procedures when vessels are missed. It's likely that these blood vessels were very, very small, but have become more prominent to the point that they are shunting an abnormal amount of blood away from Baby A toward Baby B. I think I uttered the words "This is my worst nightmare" three or four times during this conversation. It just feels like we and our babies can't catch a break.

So, what next? She offered us another laser procedure, which they would want to do tomorrow or the next day in order to prevent neurological damage to either baby due to the abnormal blood flow. This surgery would be much more risky than the first, considering there would be another hole poked in the amniotic membranes, and there is less fluid to work with. Either way, she thought it was the best chance for our babes, and we told her through our tears that we were definitely willing to do it. Sign us up! She left the room to figure out the logistics/timing of the procedure, and we waited again for at least a half hour... it turns out she had gathered her entire fetal team and they had been reviewing what the evidence says about cases like ours. They even called over to another physician in Philadelphia to make sure they had the best plan in place for us. This is what we appreciate so much about this team. No one doctor that we've talked to seems to believe she has all the answers; she consults with the rest of the team and even doctors across the country to make sure they do what's best for OUR babies. It was awesome that, within minutes of our ultrasound, our doctor from today, the surgeon, and another member of our team were physically in the same room looking at our ultrasound. We really feel like they care about us and our babies, which is really comforting.

The next person we saw was the doctor who did our laser. I was so glad to see her because I felt we had connected so well. The first thing she mentioned to us was that there ARE documented cases where TAPS resolves itself spontaneously; of course, none of us want to just wait to see if that happens, considering that the risks of neurologic damage increase the longer this goes on. It turns out that the consensus between all these physicians was that there was a less risky option than going straight to the repeat laser surgery. Since Baby A is now anemic, they can give her a blood transfusion through her cord or even into her abdomen. This will solve her anemia, at least temporarily. This could hold the babies over so we can see if the TAPS resolves itself or if it's going to be a continued concern. While this IS a risky procedure (done in the OR), the needle inserted into the amniotic membranes is much smaller and the risks are lower than with a repeat laser surgery. This was the official recommendation from the fetal team, and we trust their judgement. We will be going in for this procedure tomorrow (Jan. 9) at 1:30. It will be done with IV sedation and local anesthetic, and we may or may not spend the night, depending on how long the procedure takes and how things look afterward.

This does not mean that we won't need another blood transfusion or another laser surgery in the future, but we are going to start here and see where it gets us. We are scared and exhausted. Since we don't know when the blood started flowing in the wrong direction (it happened sometime between our last ultrasound and today), there could already be damage to Baby A's brain. Our saving grace is that our babies were "rocking and rolling" (according to the doctor) today, meaning they were moving around a lot. With severe and progressed anemia, they usually see babies' movements start to slow down. Our hope is that this means this is a new development that has been caught early.

We booked a hotel room in Ann Arbor tonight, and we're just going to relax for the rest of the day. We have to be at the hospital at noon tomorrow. Thank you for all your prayers. Please continue to pray that the procedure goes well and that the TAPS will reverse itself so no further interventions are needed. Also for Nate and me, as we are completely exhausted and worn out from all this. We will update you when we have information.

Love,
Nate, Sara, & The Twins

Hi Mom and Dad! I'm feeling a little tired; I think I need a blood transfusion!