Still here.

Still sad about the CPC. Still feel like I'm pretending to be a normal pregnant person.


I have progressed to having good days along with the bad. Days when I feel like this is a nothing, like odds are overwhelming that the baby I'm carrying is perfectly healthy. But I think about it every minute of every day. It's not even just at the back of my mind. It's at the front. The first thought I have when I wake up is something along the lines of "My baby has a marker for trisomy 18. How am I going to calm myself down about this enough today to get through work [or whatever]?" And then the last thought I have before going to bed is something like "My baby has a marker for trisomy 18. Thank god I get to go to sleep now and not think about it for 7 or 8 hours. And thank god I have managed to get one day closer to meeting him and resolving this."


The time in between these two thoughts is still marked with a certain level of obsession, depending on how busy I am with other things. I have spent so much time on google that I feel like Truman in the Truman Show when he's sailing away at the end of the film and runs into wall at the far boundary of the show's set - a big dome wall painted with blue sky and clouds. I feel like I am about to run into the edge of the internet I have read and researched so much. Only the sky isn't so blue as I'd hoped.


Don't get me wrong, there is plenty of good on the internet about CPCs. I've read literally hundreds of antecdotal stories and only a few have been horror stories. The rest have been good, inspiring, helpful, and have given me reason to think I am really going to feel silly come August for these 3 or 5+ posts I'm writing on the subject and the hours spent crying, researching, and generally obsessing. But the bad that there is is haunting. One story was about a woman who had no signs on repeated ultrasounds that anything was wrong...and still had a trisomy 18 baby. And some study once found that the incidence of an isolated CPC indicating T18 is 1 in 84 (incidence is not the same as risk, and studies on this subject in general have been roundly criticized as being based on high-risk populations who had no access to serum or NT screenings...but still). There's another story about a woman who had the same first tri screening results for T18 as I did - 1/100,000...and her baby had it. She found out at 31 weeks after some abnormalities were found, this was one week before her baby was stillborn. There was one more who was told about CPCs but that there was nothing to worry about and only later discovered more problems, and, ultimately, T18. Women whose babies measured just perfect, were very active in the womb and looked (to the untrained eye) perfect on u/s's...who found out their babies had T18 well into the third tri or even after birth.

Instead of dwelling on these relatively few stories, I'm trying to concentrate on the hundreds there are out there about babies who had CPCs noted as the only anomaly on their 20wk u/s and either did or didn't get further diagnostic/screening tests, and turned out fine. I love stories about doctors who don't even tell their patients about isolated CPCs and there are quite a few about patients with not only CPC's but one or two other soft markers as well whose babies turned out to be perfectly healthy. I try to focus on studies finding no instances of T18 in patients with isolated CPCs and the one which found no increased risk of T18 in patients with an isolated CPC and a normal NT measurement. I try to focus on adopting the attitude of posters and bloggers that took the CPC in stride and refused to let it ruin their pregnancies. One helpful blogger put it better than I ever could towards the end of this post. Her baby had a cyst at her u/s and her attitude was that she wasn't going to worry about it because if it otherwise "walks like a duck and quacks like a duck..." there doesn't seem to be any reason to suspect a problem. Two of her commenters had the same thing happen - CPC found, told not to worry. One of them even said she wasn't the least bit worried. Well she said "was" the least bit worried, but doesn't that look like a typo? Not the least bit? I need to be more like that.


I am more or less resigned to the fact of the cyst and associated increased risk. When I first heard the news I think I was trying to resist it somehow, push it out of existence because it wasn't fair. Because I deserved a break from fear. But we all know that's not how life works. I resisted that I was once again the 1 in 100. But as it turns out, these things might be more common than that - 1 in 50 or even 1 in 33 (it's still scary to compare that to the 1 in 2 or 3 of T18 babies that have it). And the consensus is that an isolated CPC, if it increases risk at all, does so by a factor of 7-10. Even if I'm being conservative that leaves me with a 1 in 10,000 chance. Which seems good to me.

I'm standing by my gut instinct that a second scan isn't necessary. If you can even call it a gut instinct when really it's also the advice of two doctors. There is of course a world of good that could come from a good scan, but bad things can happen too. I don't want any more soft markers pointed out to me, I don't want anyone pushing an amnio. And even though I have no reason to think either of those would happen, why put myself in a vulnerable position if no one is telling me I should? DH asked me recently what I would do if I knew he had 'it.' It was obvious to both of us that we would not terminate the pregnancy, but I responded that it would help us prepare and that I wouldn't be planning a baby shower and we wouldn't be planning a trip to Mexico in December... He didn't have to point out that these plans just aren't of any real consequence in the big scheme of things. What he did say resonated with me - he said "sometimes it's better to just not know. If I had known that my mom was going to die I would have lost it." Brilliant minds may differ on this but for me, I think that's right. I don't know how I could live with the information for these four extra months. I don't think I could function. If we are dealing with a worst case (however unlikely), better to find out suddenly when my pregnancy ends or after the birth when I'm on leave and have time to deal with the situation. T18 is not something that can be fixed by knowing about it in advance.

Back to reality. The pregnancy seems to be going well. The baby kicks and turns and elbows and gets particularly active when I eat. He responds sometimes when I poke at him. I love having the interaction. Love knowing he's alive and with me. I use my happy moments and optimistic days to work on my registry, to talk with people about the right stroller to buy and which swaddlers are the best, what classes I really need, and how DH cannot stop making insensitive comments about my 'double-sized' proportions. But all the while I have this monologue going on in my head dictating that I will not be comfortable doing or saying any of it. I will be slightly reserved when I talk about the due date, the shower invite list, the plans for the nursery. And I cannot do anything related to pregnancy unless I can somehow justify in my mind that I would do it regardless of whether the baby is healthy. For example. I will order furniture and set up the nursery but only because I can remind myself that either this baby will come home, or, if not, there will be another in our future (and it pains me that I can't be sure that would be our path if this baby didn't make it - anything can happen to a couple after the loss of a child, who do I think I am to think I know how DH and I would feel in such a case. Or that we'd be able to conceive again.). People can throw me a baby shower if they want. It's not that I won't appreciate it, I will. It just won't be what I was hoping. I think it will be a hard day, but maybe it will be late enough in the pregnancy that most of my fears will have dissipated.

The silver lining in this is that there is not a single other thing I am worried about. Not one. I am less freaked out about driving, about what I eat, about the dogs jumping on me, about labor, and even about things unrelated to pregnancy. Problems at work seem kind of small - not necessarily because the CPC itself seems like such a huge deal (it doesn't, really) but because now I know the tragedy that can and does unfold during this process for some people. I have over-educated myself. And I still feel vulnerable. And my empathy has enabled me to avoid concerns with more superficial matters.

My mom recently emailed me about coming up with a date for my shower. Attached to that email was a long string of emails between my mom and my aunt. At one point my aunt asked how I was doing and my mom responded "oh fine, Astrid is just being a worry wort about the baby's health...but that's Astrid." Please let that be all this is.