Well, I’m thrilled to have made it to 12 weeks, a big milestone in pregnancy! Unfortunately, the “morning” (all day) sickness is still going strong. It actually seems to have gotten a bit worse in the past week, boo! At least my appetite is picking up a bit, and I’ve managed to gain back two pounds of the six I’d lost. My baby bump is definitely starting to pop out a bit!
Last week I had my first appointment with my MFM (high risk) doctor. It was the first appointment Jacob has been able to attend with me, and also his first opportunity to see our two babies. Unfortunately, he would have to leave partway through the appointment to pick up Juliette from school and run her to therapy.
We had to meet with a genetics counselor first, to go over our family history. I told her that I am autistic and so are our eldest two children (we’ve concluded that our youngest, as far as we can tell, is neurotypical). She asked if any of us have ever had genetics testing, and I explained that Juliette had DNA micro-array testing and also was tested for Fragile X Syndrome. Her results all came back “normal,” meaning her autism is not caused by a genetic deletion or duplication, and she doesn’t have any co-occuring syndromes. The genetics counselor concluded that the twins are most likely not at increased risk of any chromosomal problems, but we would learn more after this appointment. They would be performing the first trimester screening, which includes an ultrasound to measure the fluid at the back of baby’s neck (increased fluid can indicate potential problems) and bloodwork, the combination of which will calculate our babies’ particular risk of trisomies, including Down Syndrome.
Next we had the ultrasound. The technician was a very severe looking woman with an even more severe personality. I was immediately taken aback by her cold demeanor and short way of speaking to us. As she started the ultrasound, I saw two fully formed babies, with clearly beating hearts, pop up on the screen, and I was flooded with relief and completely mesmerized by their beauty. I’d had a lot of anxiety leading up to this appointment, and I’d had disturbing dreams the night before that we would discover the babies to be horribly disfigured. I cannot even describe the sweet relief I felt seeing my babies on that monitor.
Suddenly I realized the woman had asked me something, and was looking expectantly for my response. She wanted to know which baby was A and which was B. I was shocked out of my thoughts by her blunt tone, and confused by the question. I stammered, “I…don’t know? Am I supposed to know that??” She gave a heavy sigh and an eye roll, obviously annoyed, and stomped out of the room to go look at the photos from my last scan to determine which baby was which. Jacob and I turned and stared at each other, silently communicating our disdain for this woman. Jacob murmured, “wow…” and I quipped, “I know! I’m scared of her!” We both laughed, breaking up the palpable tension.
She came back in and continued the ultrasound, having now determined which baby was which (still not sure why she expected me to know?). Neither baby was positioned quite right to get the NT measurements, and the tech was clearly quite frustrated. She was moving the wand around swiftly, pressing into my uterus quite hard, going back and forth from A to B, scolding the babies out loud for not cooperating. I couldn’t help but think that perhaps the babies disliked her as much as we did! Maybe they sensed her bad vibes, like two little empaths already in utero.
Jacob had to leave about ten minutes into the ultrasound, but I was glad he’d at least gotten a quick glimpse of our two little miracles. The tech continued to roughly scan me, berating the babies, especially Baby A, who appeared to be “the feisty one,” which made me smile. Go baby A! I wonder if he/she will always be a little spitfire? LOL
I could not resist asking if she would venture a guess at the sex of the babies, knowing full well that this tech was certainly not going to do me any favors. She rolled her eyes again and snapped that it was too early. I have my own prediction as to which sex I think they are, so I will have to see if I am right! 😉
Eventually she got all the measurements she needed, and she ended the scan as abruptly as she’d begun. She unceremoniously handed me a small folder with a few pictures. Here is my favorite picture of the two babies together. They were being so cute! Through the whole scan, they were head to head, either facing each other, or both facing in the same direction, in a “spooning” position. The babies are separated only by a thin membrane, so they can interact with each other quite a bit. We saw them reaching out for each other’s faces and kicking each other. Baby B was mostly lying right on top of Baby A! LOL
After the ultrasound, I met with my MFM doctor for the first time. My OB had informed me, almost apologetically, that the MFM speaks very academically and formally, which I figured would be great, since I am basically the same way. Also I feel I’m probably more educated than most patients about twins and the risks involved with monozygotic twins specifically, since it’s become my newest “special interest.” LOL
The MFM….holy moly….if he isn’t on the autism spectrum, I would be shocked! He stiffly entered the room, shook my hand briefly, clearly uncomfortable at my touch, then awkwardly sat down, opened a medical book, pushed his glasses up on his nose, and began talking in a low monotone voice. There was no small talk whatsoever, no pleasantries; he launched right into a monologue about E antibodies and how my immune system could attack my babies’ red blood cells if their blood carries E antigens. He did not look up at me the entire time he was talking, so I averted my own eyes to help make him more comfortable. Eye contact is something I have trained myself to do, but I know that I sometimes end up looking at people too intensely. I try to remind myself during conversations to look away periodically, but sometimes I still catch myself staring directly into people’s eyes like I’m about to steal their soul or something. I’ve made myself a mental note to greatly reduce my eye contact at future MFM appointments. Hopefully he will warm up to me a bit!
Everything the doctor was saying agreed with the prior research I had done. He definitely knows his stuff! After we discussed the E antibody issue, he spoke about monochorionic/diamniotic twins. The biggest risk with identical twins that share a placenta is Twin to Twin Transfusion Syndrome. This occurs in 15-20% of identical twins, and what happens is that one twin takes (or transfuses) blood from the other twin. The result is that one twin lacks adequate blood, and the other has way too much blood, which can cause heart failure. TTTS can occur at any time during the pregnancy, but the most common time frame for it to develop is between 16-24 weeks. I will begin having biweekly ultrasounds at 16 weeks to monitor for TTTS, and I believe after 24 weeks they will go to weekly ultrasounds. If TTTS were to develop, they have ways of treating it, such as in utero laser surgery to cauterize the blood vessels that are carrying blood from one twin to the other. TTTS used to almost always be fatal, but major medical developments have occurred in recent years, and now there is hope for survival of TTTS babies, especially if it is caught in the early stages. Proper monitoring throughout this pregnancy will be imperative.
Another important thing to consider in a mono-di twin pregnancy is the timing of delivery of the babies. The MFM stated that the longest I will go is 36 weeks and 6 days (although he said it quite precisely like, “thirty-six and six-sevenths weeks” which made me want to chuckle. The wise doctor certainly did have a formal manner of speech! The reason for early delivery of mono-di twins is because a shared placenta deteriorates much more rapidly, and at 37 weeks the risk of stillbirth shoots way up. I certainly will not be pushing my luck! Although it seems alarmingly early, “full term” for twins is different than full term for singleton babies. And considering I’ve already had a baby at 37 weeks who came out perfectly healthy and a good size (6 lbs 1 oz), I have to trust that my twins will be ready to be born at 36+6.
After the doctor went over all of the potential risks, he shut his medical book, ended his soliloquy, again stood up awkwardly, and left the room. The nurses filled the silence and made up for his lack of small talk with some nervous chatter. “Wow, twins! You must be so excited! Do twins run in your family?” Side note: I’m amazed how many medical professionals don’t know that identical twins are a random, non-hereditary occurrence!
After meeting with the doctor, Jacob (who had come back at this point) and I walked down to the lab to get our bloodwork done. They needed to test Jacob’s blood to see if he carries the E antigens. This would help us understand the babies’ risk of having E antigens and how likely it would be that my E antibodies would attack them. As we were waiting in the lab waiting room, the MFM doctor walked past us. I nudged Jacob and whispered that he was the doctor (since he hadn’t gotten back in time to actually meet him). The doctor glanced up and looked right at us, then quickly looked down and turned away, pretending he hadn’t seen us. I whispered that the doctor was probably aspie, and Jacob gave a knowing “ahhhh, I see.” Clearly, I would be in good hands – and good company – with this extremely intelligent (albeit slightly socially awkward) doctor handling my care. ❤
A few days after this appointment, the genetics counselor from the MFM office called to share my test results with me. The first item was good news. The results of my NT screening showed that both babies have a less than 1 in 10,000 chance of having Down Syndrome or other chromosomal abnormalities.
The second item is a bit complicated: Jacob’s E antigen blood test results. The test showed that Jacob is positive heterozygous, which means that Jacob’s blood is “Ee.” My blood is “ee.” What this means is that the babies have a 50% chance of carrying the E antigens in their blood. Had Jacob been EE, the babies would have had a 100% chance of having E antigens, since Jacob’s EE and my ee would have to combine to make the babies Ee. But, since Jacob is Ee, the babies have a 50/50 shot of inheriting his Ee or my ee. We just don’t know for sure which of the two they are. If the babies are ee like me, there will be no issue. If they are Ee like Jacob, my immune system could detect that E floating around in the babies’ bloodstream and begin to attack the babies’ red blood cells, causing severe anemia, liver problems, possibly even death (but this occurs only in rare cases where the E antibody issue isn’t detected or properly monitored).
So, why is this a problem for me during this particular pregnancy, but I’d never tested positive for E antibodies in previous pregnancies? Well, my body is producing E antibodies because at some point, it has come in contact with blood that carries an E. My body recognized the E antigens as foreign, and began to produce antibodies to attack the E antigens if I ever come in contact with them again. There are a couple ways that one’s body can come in contact with foreign antigens. One is through a blood transfusion (which I have never had). The other is during a previous birth. So, what most likely happened is that Lennon and Juliette are probably both ee like me, so when they were born and their blood mixed with mine during their births, there was no immune response. My third child, Roland, is most likely Ee like Jacob. When Roland was born, his blood combined with mine, and my immune system recognized his E as a foreign entity and began producing the E antibodies. Again, this will ONLY be a problem if the twins are Ee, which is a 50% chance. We do know that since they are identical twins, they will have the same blood type, so they are either both Ee or both ee. There can’t be one of each.
So how will they monitor this? Well, my current E antibody level is 1:1, which is the lowest it can possibly be. My blood titers will be tested once per month throughout the pregnancy. If the numbers stay low, we can assume that either the babies are ee, or they are Ee but my body is just not reacting strongly to the E antigens. If my E antibody level rises to 1:16, they will begin monitoring the babies for signs of anemia. They do this by detailed ultrasounds that will measure the flow of blood through arteries in the babies’ brains. If the blood is rushing through the arteries too quickly, it means the babies have developed anemia. They can treat this by giving the babies in utero blood transfusions, or transfusions after they are born. They may require more NICU care due to severe anemia and/or severe jaundice.
At this point we have all the information we can possibly have. We now know that Jacob is Ee, which is better than him being EE. Basically, all we know is that there is a 50% chance that this MAY cause problems…..but there is also a 50% chance that everything will be just fine. All we can do is cross our fingers that the babies are ee, and hope my titer numbers stay nice and low throughout the pregnancy.
So, that’s where we are at the end of 12 weeks of pregnancy. I am 13 weeks today! Next week Monday I will have an appointment with my OB, and I will see MFM again on 2/24….cross your fingers we may be able to find out the sex of the babies at that appointment! 🙂