Twin Day (Sort of)

Another Thursday has come and is quickly coming to an end. On our former schedule, today would mark the completion of 18 weeks and our Half-Way Home Day. You caught that I said “former”? Yes, well, we’re in the process of possibly revising our dates.

During our last high resolution ultrasound by the baby-ninja at the end of February, our boys were a week and a few days ahead of schedule. On Monday, when we returned to the baby-ninja (and found out the gender of our twins), they were surprised that our regular Ob/Gyn hadn’t updated our due date.

So what would the new due date be? August 30th.

Plus, our twin day would be moved from Thursday to Monday with this past Monday marking 19 weeks (a jump of a week and 4 days). This means that we’d already passed Half-Way Home Day without knowing it, and this next Monday would mark the momentous 20 week mark. Soon, our boys will be crossing the edge of viability. (We still need to talk to our regular Ob/Gyn to see if they also agree with moving the date up to August 30th.)

Why Did We Get an Extra Ultrasound?

We got a call around the end of March to tell us that our babies were at a higher risk for Down Syndrome based on our second round of diagnostic bloodwork, and this qualified us for a follow-up ultrasound to check for other possible physical markers. Ah, that dreaded phrase “higher risk.” It can cover such a large range of territory.

I asked specifically what the numbers were, and they told us: 1 in 49. Now, that sounds like a pretty scary number. If your brain was already frozen by the phrase “higher risk,” it might even want to illogically jump to thoughts of a 50% chance of Down Syndrome. I mean…50%, that would be a pretty high risk. However, when doctors’ give you these numbers it helps to switch them into percentages. 1 in 49 is right around a 2% chance. 2% – not something to become extremely worried about. (Why are they higher risk? A couple of the proteins [HCG and another one] in my blood that are produced by the babies were higher than expected – even for twins.)

Still, we jumped at the chance to go in for another ultrasound because our birthing center had dismissed the baby-ninja’s recommendation that we start going in for ultrasounds every 2 weeks from 17 weeks until 28 weeks to watch for Twin-to-Twin Transfusion Syndrome (TTTS). We figured this was a chance to check for TTTS and to possibly learn our babies’ gender early.

Our Current Concerns: Twin-to-Twin Transfusion Syndrome

To start, let’s review some numbers. First, around 3% of births are twins. Of twin births, only 8% are identical twins, so identical twins are less than 0.4% of all births. That’s a pretty small percentage. What does this mean for us? For one, regular Ob/Gyns do not typically deal with a large number of identical twins in their practice.

Now, Twin-to-Twin Transfusion Syndrome (TTTS) occurs in 1 out of 7 monochorionic identical twin pregnancies, but it isn’t a concern for fraternal twins or that small percentage of identical twins who have completely separate placentas. I believe one reason why our diagnostic specialist took it much more seriously than the midwife we saw at our birthing center is because the birthing center is less aware of conditions specific to identical twins.

What is TTTS? Because our boys share a chorion and placenta, some of the arteries and veins responsible for circulating their blood and nutrition can become linked in such a way that one baby receives too much and the other too little. The one who receives too much has extra strain put on his heart, and the one who receives too little eventually becomes anemic and stops excreting waste. This can develop and become serious very quickly, putting both babies at risk. However, if caught early, there is a laser surgery treatment that is pretty effective at halting the escalation of the problem. This is why regular ultrasounds are so important.

What did we learn at our last appointment? First, our appointment lasted around 2 1/2 hours. We had a short consultation with a genetic consultant who explained why the babies were considered at higher risk for Down Syndrome (the 2 proteins mentioned above), and she offered us the option of amniocentesis again. We also mentioned our own concerns about wanting to check for TTTS while there if possible.

Then, we were ready for the ultrasound. We had the same technician as before, and she took lots of measurements and especially examined the babies’ hearts and bladders. After she finished, Dr. Hershey (the baby-ninja) came in, and together they looked again at certain aspects of the babies and examined the relationship between the two amniotic sacs. I must admit that when the big guy comes in and starts discussing your babies, it is a bit stressful. We couldn’t follow the relevance of most of their conversation, but we knew we just needed to be patient, let them do their job, and wait for them to talk to us afterward.

Dr. Hershey himself came in to do the follow-up consultation with us. We barely discussed the risk of Down Syndrome. First, he told us that both boys looked good, and they are still close in size. One was the size expected for 19 weeks and the other for 19 weeks and 2 days (I forgot to ask their specific lengths).

However, he stressed the importance of monitoring for TTTS. It turns out that Dominic (our lower-left twin) has less fluid in his amniotic sac than Alexander does. This, in itself, does not mean that they have or will develop TTTS, but it does mean that they should be watched closely. He cautioned us with a tale of a couple who were not having their twins monitored for TTTS and who lost both babies, but he also emphasized that TTTS is treatable if caught early. In fact, one of the places that does the laser surgery treatment is the UC San Francisco Fetal Treatment Center (You can visit their website for more information).

Our Next Goal: Our next appointment is Wednesday with a perinatologist, and our plan is to get her on board for regular ultrasounds to monitor for TTTS. I also rescheduled our next birthing center appointment for the following day with an Ob/Gyn (instead of a midwife), and we will be working to convince her of the importance of the TTTS ultrasounds as well. If need be, we will request that they call the baby-ninja to discuss why this is so important.

Our last appointment at the birthing center we were surprised by the midwife’s decision to ignore the diagnostic specialist’s recommendation with the dismissal that “Radiologists always want to do more scans,” and we didn’t immediately question that decision. After the appointment, that dismissal started to bother us more and more. Now, we will be going to our next appointments armed with more knowledge and prepared to hold our ground and question our doctors. Hopefully, with the baby-ninja’s renewed recommendation for this monitoring, we won’t even have to be insistent. Hopefully, the perinatologist and Ob/Gyn will already be on board.

Prayers and Good Wishes Welcome

Since our last appointment, I’ve continued coaching Dominic and Alexander on sharing blood and nutrition equally, and I’ve added that they need to balance the amount of fluid in their amniotic sacs. (Hey, it can’t hurt!) We welcome prayers and good wishes for the health of our little boys. We’re at least half way home now, and they already have a crib waiting for them.