Que Sera, Sera

Remember the song Doris Day sang? Look up the lyrics if you aren't familiar with the song Que Sera, Sera. It seems fitting to be humming this tune in my head as I write this update.

So here's the technical part: I had a level 2 u/s for fluid level check for the cystic hygroma and hydrops in her stomach area. I repeated an echo for her heart as well. The cardiologists found a small coarctation of the artery and a possible right ventrical narrowing. Both issues would not be detrimental in utero, however will most likely require immediate heart surgery to correct within the few days after birth. This information is helpful to us because if she does make it, she'll require a cardiac team to be available upon delivery to insert an umbilical IV to give her medication to keep the valve open until they can do a procedure.

We met with the team at the end of the day and discussed the options. Because they feel that the fluid levels in the CH, hydrops, and skin edema appear to be stable, they think she may have a chance of survival to birth. Due to the hygroma size of 4 cm, they don't feel she will make it full term so the best case scenario would probably be to have a c-section at 30 weeks to help her sister (baby A) get as much development as possible and increase her chance (baby B) to develop so that it would be less of a risk for her heart surgery. Why can't they drain the cystic hygroma and/or hydrops? Well it's ultimately a lymphatic system issue and the fluid would come back unless it starts to correct itself on its own. That's the wait and see part. Also, draining would cause increased risk of rupturing the membrane (preterm labor) and these babies are constantly moving and kicking, so there isn't a lot they could do to keep her still enough to make sure they don't puncture other areas.

The RFA (cord coagulation, basically termination) of baby B is no longer an option due to multiple reasons, mainly ethical but also that their statistics show 1 out of 4 RFA procedures has resulted in the loss of the co-twin. So while this would be the last possible option, the idea would be to protect baby A and instead it shows that by doing this we may increase the risk of death to her.

The separation of the placenta (they have equal share of one placenta) is also too risky to chance for us, given their statistics and due to the positions of both babies, and also that I have an anterior placenta. They also cannot guarantee that they'd be able to successfully separate the shared veins without risk additional risk to both babies and also risk to myself. So with all that information, we decided to do nothing. This decision comes with many risks, but they seem to be less than doing a procedure. Baby A is at an increased risk of cerebral palsy and brain defects if baby B doesn't survive in utero.

There were circumstances that were mentioned that were not mentioned in the last trip. I feel like I got more results and clearly defined parameters this time, where there were a lot more questions the last time around.

The absolute bottom line is that no one has ever dealt with this particular circumstance and they are not comfortable making a decision with absolutely no data to give them any reference. The only data they have is for one twin who would not make it, no matter what. Never have they had a situation where one twin "might" make it if they do nothing.

The doctor in Cincinnati told me I'd most likely have these babies by 30 weeks. A few things point in that direction. Baby B is taking up a lot of room with her fluid in her cystic hygroma, which puts a lot of more pressure on my system and typically these type of babies deliver earlier, even in singleton pregnancies--so in a twin pregnancy it's that much more complicated. Also, there may have to be a decision/compromise between baby B's health as she continues to grow and baby A's development. 30 weeks would be that magic number where they both would have a good chance at minimal time in NICU for baby A and baby B's development would be just enough where heart issues, etc. won't pose any additional risks than already present by being premature. Anything before 30 weeks (26 weeks to 30 weeks) would add additional stress to baby B by getting her developed enough to add heart surgery onto the list of premie issues, and baby A would also have premie issues to deal with. Anything after 30 weeks may start causing concern if baby B shows no signs of fluid levels going down, as mentioned above. They won't want to risk preterm labor knowing that I'd need to have a cardiac team on hand when baby B comes out. At this point in time (20 weeks) baby B's fluid levels seem to remain the same and are growing in relation to her development. So while they'd like to see the levels go down, it could be that they stay this way the whole time. If the fluid levels stay this way until birth, the cystic hygroma could be drained, but may come back and eventually resolve as the lymphatic system matures, or it could come back if she gets an infection at some point in time. This could be an issue that will be managed into adulthood.

I see my regular Perinatologist tomorrow to discuss things moving forward. I had called him from Cincinnati after the consultation and he's concerned about his diagnosis vs. the diagnosis with the team in Cincinnati. So he was going to talk to the doctors to see if maybe they had a medical opinion other than what they shared with me. Even if so, unless we see significant changes in baby B's condition, it's que sera, sera from here on out.