I don’t know where to begin, so I will start in the middle. It seems like the right place to start.
As I mentioned, I am AMA (queue forboding music). One of the perks of being a geriatric pregnant person is the Terrorist Threat Level Orange ultrasound (aka Level II). Because I live in a major metropolitan area, I have my choice of several maternal fetal medicine practices. I opted to go with University of Chicago because of geographical proximity (and it’s not like U of C is Joe’s Ultrasound Quik Shop).
I have been extremely satisfied with their practice (even the billing that’s all messed up is corrected quickly and cheerfully). Because well over half of all births in Indiana are paid for by Medicaid, my regular OB’s office often feels like one of those overcrowded trains in other countries where the people are crammed into the train with a very nice but firm stick (I’m thinking bullet trains in Japan and stereotypes of India). We’re all crammed in there together. The MFM practice is calm. Relaxing even. Well, it was once we found the volume knob on the TV.
So, on Tuesday, they scanned Muse for an hour. The ultrasound tech said very few things during this time. I kind of prefer a guided tour of my uterus but since he was typing captions on the photos, I was able to keep up. 4CH means a 4-chambered heart, CX is a nice photo of my 4.75 cm long cervix, Chor Plex is tasty, tasty brains and so on. Because this is a MFM practice, you go from the ultrasound room to a meeting with the doctor to go over whatever they saw (which I like to call the part where they just tell you your baby is big, beautiful, and they wish all their patients were just like you). However, we couldn’t go right in to see the doctor because he was delivering triplets just then. So, we had to wait. No biggie. They told us to go get something to eat and don’t bother coming back for at least a half hour.
So, Mr. Long-Suffering and I went for chili cheese fries and a chocolate shake at 10 am. I don’t think I could have looked any more like a stereotypically pregnant person if I had been holding my back and walking around barefoot. When we got back, The View was on TV (see volume adjustment). As a total aside, the correct answer, when asked “Are you sexually attracted to children?”, is “No.” I would also accept “Hell no!” or “Oh my god, no.” Anyway, it was only a few more minutes and we got in to see the doctor. He went over all the photos but they weren’t in the order they were taken and they weren’t in the order on his review sheet. Three kinds of pictures were saved for the end.
The first was the photos of the placenta. Apparently, Muse has a two-lobed placenta that does not cross the cervix. It’s a minor concern in a planned c-section. If it was undiagnosed, a vaginal delivery, crossed the placenta, or had umbilical insertion in the connecting tissues or on the smaller lobe, it could be a concern, but in a planned section, it’s fine. It is worth knowing about, though, because it’s important that both lobes are removed to avoid retained placenta and all the pain and blood loss associated with that.
Next, we looked at the heart (4CH). There must have been 30 pictures of the heart and Doppler blood flows thereof. The heart has an echogenic intracardiac focus. This is just a small area of the heart that is brighter (white) than everything else. It could be a small calcification or something – nothing of clinical significance. It could also be a soft marker for Down Syndrome. It’s a weak soft marker (depending on the study, it either doubles a woman’s risk or makes it up to a 1% chance).
Lastly, we looked at the bowel. It was echogenic as well. An echogenic bowel can be caused by one of several things: nothing at all, the fetus swallowed blood during a bleeding/spotting episode earlier in pregnancy, cycstic fibrosis, toxoplasmosis, CMV, and Down Syndrome. At this point, I really had wished we’d been able to do the combined nuchal screening and blood tests. As he rattled off possible casues, I had an answer for everything. My bleeding was between 3.5 and 5 weeks, which is before the fetus had a mouth so could not have swallowed blood. I am not a carrier of CF (checked while pregnant with Chuckles) so even if my husband is a carrier, the baby does not have CF. I was negative for toxoplasmosis in August, our cat lives indoors, and I haven’t been cleaning her litter, and I wear gloves when gardening and wash my hands afterwards. I donated blood (which pregnant, actually) and am negative for CMV, and Bobo does not go to childcare or pre-school. I do not visit elderly relatives in nursing homes.
And Down Syndrome. I told the MFM that I had the quad screen done, and I screened negative. I did not know my specifc numbers. My age related risk is 1:270. The receptionist called my OB. The office said my chart was down in medical records and it would take a half hour to get it faxed over. Ok, then. In the meantime, we went over family history, I was given a neuro exam to check the 12 nerves of my face, I had to breathe and be listened to. We were offered the amnio. We said we’d like to wait on the other test results before we decided. My husband (out of nowhere) said that the amnio results aren’t actionable, so why bother. I contradicted and said that we might choose to deliver at a different hospital if we had a known problem, plus I might make support arrangements for nursing if there were going to be any issues (though lip and palette are both cleft-free). The doctor merely said he had to offer it, but that he could talk statistics and odds with us. He said that no one really knows for sure but an echogenic focus in the heart and bowel are both weak markers for Down Syndrome. Possibly, they increase the background risk (not the age-related risk) by perhaps up to 10x (he really did hem and hawa nd perhaps and possibly that much...the studies just aren't there). He said that it isn’t really known how much, but it does increase the risk. I asked about the MaterniT21 test (it's new...it looks for fetal DNA in the mother's blood. It's highly accurate and non-invasive). He said it wasn't commercial. I said that it's been commercial for a month but has limited availability but is available in Chicago (apparently, not at U of C, though). It's only $235...if you can find someone to give it to you.
I said that I would want to amnio if my "new risk" were greater than my age related risk. My husband didn’t want it no matter what but said that it was ultimately my decision. I asked the doctor whether placental placement in my specific uterus meant that the procedure was riskier than typical (answer: no). He asked us about blood types (both O+) and allergies to metals (yep, nickel) and drugs (yep, penicillin), etc.
Then we were asked to sit back in the waiting room. After an hour of that, I called my OB’s office and asked where my test results were. Many, many happy smiling patients and families clutching ultrasound photos came and went in the time we waited. Each of their consults lasted about 10 minutes. Ours had already been more than half an hour and we still weren't done. At this point, I was so happy I had eaten. Then the doctor came in, called my OB’s office, read them the riot act, and our results were faxed over. My age-related risk of Down Syndrome is 1 in 258. My Age+Screen result is <1 in 5000. So, even using the worst case scenario numbers of 10x increased risk, we’re still only looking at <1 in 500. That’s >499 in 500 are genetically normal. We opted not to get the amnio, and left the office about 5 hours after we had arrived. I am getting re-scanned in 8 weeks to follow-up on the heart.
That’s all I know.
Oh, actually, I convinced my husband that even outside of termination (or, interruption, as the doctor put it), results of an amnio are actionable. I convinced him that if there were a heart defect, I would prefer to deliver at the hospital where any necessary surgery could be performed. I wouldn’t have to be separated from him and the baby while they were transferred (or something). Though, my husband did say he would like to ride in a helicopter (but not with a critically ill neo-nate).