The Murky Unknown (5w6d)

As is usually the case in very early pregnancy, and even more so when the peppercorn sized tadpole is not in your uterus, there isn’t a whole lot to report on right now. L continues to have quite a bit of nausea and cramping, and this week had a couple of days where she felt intensely emotional, but there isn’t a lot else happening. According to the app I downloaded, it’s likely that Tiny’s little heart started beating – or will quite soon – and that they have the beginnings of a lot of their future important organs. So, probably it’s a lot more exciting for Tiny right now than Tiny’s moms.

We did some research and asking around about possible care providers and, based on some overwhelming recommendations, made a decision to go with a hospital based midwife practice in town. This is pretty similar to what we chose for Ansel/Seafoam’s prenatal care, so at least right now, it seems familiar. We booked an appointment with them for 8w2d – just a week after our ultrasound with the fertility clinic. They sent a huge packet of materials to bring filled out to the appointment, including a bunch of information about first trimester screening.

This is not familiar to us. For a few reasons:

  • BFF and I both had pretty extensive genetic screening prior to the IVF cycle, as that’s protocol for the Colorado Clinic (hereafter, CC) And so we knew neither of us were carriers for any of the big genetic issues.
  • We chose to do the CCS testing on our embryos, which effectively ruled out any chromosomal abnormalities that might show up.
  • I was 32 when Ansel was conceived and 33 when he was born, so did not fall into “Advanced Maternal Age” guidelines.

But, none of this is true this go-around. We had planned to have testing done on embryos, but since there was no IVF, there was also no chromosomal testing. Because we opted for the CCS testing of embryos, we were advised to forgo the genetic testing on L (which makes way more sense than the way CC does it!) although we do have additional information on the donor from the bank – so, that’s pretty helpful for ruling out a lot of things, although not all of them. Finally, L is 36 an so qualifies as “Advanced Maternal Age” and thus is both at higher risk for chromosomal abnormalities and complications.

All of this was vaguely on my radar, but absolutely came into much clearer focus with the arrival of the paperwork. I forgot how much more confident we could be with my pregnancy – how nonchalant we were about announcing it – ON FACEBOOK! – at just 9 weeks! Of course, there was always a chance of miscarriage – nothing rules that out entirely – but it was so much lower. And the risk of other, more complex issues – like down syndrome – weren’t on the table at all.

So, today I called our insurance to get information about coverage for the various first trimester screening tests and their associated costs. Once again, I am grateful for our amazing insurance coverage, which has the same benefit level for all of the various tests we can choose from. And while the more a test costs overall, the more our portion would be (we pay 15% co-insurance for pretty much everything, with a very low out of pocket max – $2500 for our whole family to be exact. The deductible, already met and carried over thanks to something called a 4th quarter carryover policy that I didn’t know existed – has already been met for 2017!) It’s still amazing coverage.

So, we are going to have the Informaseq test done – a maternal blood test that uses “cell free DNA” to test for the 3 most common aneuploidy conditions with a very high confidence rate (still not diagnostic, but the most accurate the clinic we are going to offers.) Because the test also includes analysis of the sex chromosomes, we’ll also get a pretty sure answer about Tiny’s chromosomal sex. They can do the informaseq anytime after 10w – coming right up!  Because the test doesn’t evaluate neural tube defects, we’ll also have a 12-14w NT scan – something I also didn’t have, since again, it wasn’t necessary.

I feel excited, but also super nervous. I keep reminding myself that we have no reason to be concerned, really. Except, of course, we do. I mean, of course, that L is “older” (yesterday I teased her about her aged and infirm eggs) which DOES actually increase risk of trisomies. For Down’s syndrome, it increases quite a bit – 1/360 at 35 vs. 1/1100 at 25.  And I think this might be the most terrifying prospect for me – much more than the chance of miscarriage. The idea that we might be faced not with a tragedy beyond our control (though, don’t get me wrong God/Universe/whatever – I’m not inviting that either) but with a horrifying and difficult decision to make. In the case of some trisomies, the decision is pretty straightforward*– survival rates are incredibly low, there is clear pain or abysmal quality of life for children who do live to birth or early infancy, there is a high risk of stillbirth. But T21 feels a little different. The variation in quality of life is huge. People with T21 can live long, reasonably healthy and engaged lives. And some don’t, at all. Regardless, it would require a huge shift in our lives. And while I believe deeply that all people should be able to get abortions for whatever reasons (yes – even lots of them, yes even as ‘birth control’ yes even late term, yes . . .) that doesn’t mean I don’t have complex feelings about terminations based on physical or mental ability, it doesn’t mean I wouldn’t struggle intensely if faced with that decision.

I’m hoping we won’t have to face it. Despite being at higher risk than others, the statistics are still very much in favor of it not being the case. And besides, borrowing worry won’t do a damn bit of good right now. Right now, we are pregnant. Right now, things are good. This is the moment we are living, so we might as well stay here.

I’m going to start separating out posts about Tiny from those about Ansel. It feels like too much ground to cover. So, I’m hoping in the next few days to update you about the developmental explosion we’ve had over here and how things are progressing with la premiere gayby.



*For us, anyway. I understand that there are folks for whom the idea of terminating a pregnancy under (almost) any circumstances is just not an option.


5 thoughts on “The Murky Unknown (5w6d)

  1. I love to hear how confident you were about doing IVF with a PGS-tested embryo. It really gives me hope, because I don’t have that much confidence in my transfer working on the first try. It feels like I’d have so much less worry if I didn’t go through IVF, but I think it’s just a case of the grass is always greener. Anyway, I hope you don’t have to make any difficult decisions regarding the pregnancy. I’m really rooting for your family!

    BTW – I would love to hear about your experience with the midwife service you’re using in Seattle…I’m leaning towards just using a doula through Swedish, because I’ve had a couple friends who had Swedish doulas for their pregnancies and they said such wonderful things about them. Still, I’ve seen 5 seasons of Call the Midwife, and I have to say it’s definitely got me interested.

  2. Why were neural tube defects not something you screened for? They are not genetic but fetal development and nutrition related. Maybe I’m missing some issue here. This is all really personal decision making, what tests and what response to results, but for me I knew that whatever test results were I would not have an abortion.

  3. oops, sent too early.

    I wasn’t going to have any screening beyond the two basic ultrasounds but ended up feeling comfortable with the ultrasound tech and wanting to see my baby a little longer, so I got that screening. I have also had friends who were told things like their baby definitely had Down syndrome and club feet and it was very stressful. Baby was born without those conditions.

  4. Ugh I remember having those worries when we were deciding to do the 12 week testing – what if… Do I even want to know in advance… Risk of false positives… Would knowing change the course of the pregnancy… In the end we did the testing (my wife won that disagreement because I didn’t want to test), and we didn’t have to face any big decisions about termination. But I feel you on the crap load of worries that come with the territory if testing. Good job trying to live in the moment. The odds are still in your favor, even with ‘advanced maternal age’.

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