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prenatal screenings: my experience

December 15, 2018

Guess what everyone?! We're 36 weeks now (and 4 days(!) — first time mom alert)!! Where did the time go?! So many things to talk about! Pregnancy is going well, smooth, easy (again, knock on wood!)... and I'm still loving every moment. 

 

We have our birth team set, as I mentioned last time. We also have a birth photographer now. For two photographers, this event HAS to be documented! I'll take a separate blog to introduce these wonderful women of Kitsap County!

 

 

I thought to take a moment to share some of the earlier experiences we've had during this pregnancy because I feel it's something that isn't often talked about... 

 

Miscarriage is something we often don't hear about until it happens to us, and I do believe as a society, we're becoming a little more open about this topic. More people are sharing their experiences around this, and I'm so happy for that. What I'm gonna share today is something that I hadn't heard before, and like miscarriage, I think should be talked about, and brought to people's attention so that it doesn't whack them upside the head like it did us. 

 

 

Being our first pregnancy, all of this is new. We did our normal prescreens, and ultrasounds and all seemed fine. Because we were not considered "high risk" we were asked about doing a prenatal screening that we'd likely have to pay for (was only about $100 and actually covered 2 tests), so, figuring that sounded good, we gave the go ahead. 

 

For one, I didn't realize this was a two part test — that there'd be two prenatal screenings, plus an additional NIPT test (non-invasive prenatal testing) that I guess everyone does. But, regardless, we do the blood work, and the first prescreen comes out negative. No issues. We're good to go. 

 

Nearing our 20 week anatomy scan, we get the results back from our second prenatal screen (this is when I learned there were 2 screenings!). This time, doc says she has good news and bad news. To skip to the bad, the second screen came back positive for Down Syndrome. So, she was referring us to a dedicated prenatal diagnostic center for further care around this. We booked our appointment at Cedars-Sinai for a counseling appointment, and a visit with the doc right after. The counseling session was designed to go over our next options for testing.

 

Not knowing much of anything about these screens, this information came as a huge blow. Lucky for us, we have a doctor in the family, and gave her a ring the next day. I understand not everyone has that, so even more reason I want to share this story.

 

I'll skip ahead a little and come back to this point in a moment. We went to the appointment, and it was far from what I expected. The atmosphere was very somber. We sat in a small office room and the counselor woman began to break down what it was we were dealing with, most of which was going over my head. She seemed to be telling us the opposite of what we had heard from our family doctor though — she was saying that our baby only had a 5% chance of NOT having Downs.

 

She continued on, giving us our options for further testing, but where I thought she'd be more of a neutral source of information to allow us to make our own decision, she instead was heavily leaning towards us having an Amniocentesis (otherwise known as an Amnio test). In an Amnio, they stick a needle into the amniotic sac and collect some amniotic fluid to test for chromosomal abnormalities and fetal infections. The amniotic fluid is a surefire way to test for Down Syndrome, being it contains fetal tissues from the baby. 

 

Though low, there are some risks involved in this procedure, including introducing a foreign object into the amniotic sac, which could cause infection. The other thing, is that I'd be bedridden for a day or so, and was supposed to keep activity very low for the 5 days following. This doesn't seem like just a quick simple procedure! 

 

She said our other option would be to do a NIPT scan, which is still just a screen (not diagnostic), but a more accurate test than the one we just had done. She didn't seem to love this option, being it'd be a lengthier process as well, and still inconclusive. 

 

Are there no physical signs an ultrasound tech can look for to see if the baby might potentially have Down Syndrome?! A more detailed anatomy scan didn't even come up as an option. What about increased thickness at the back of the neck, dilated brain ventricles, a small or absent nose bone — these are all things that can be detected in an ultrasound, and no, of course it's not going to be conclusive, but if one of these things doesn't look good, check another, and then another, and see how many check out! There are multiple things to look for here, and the more that line up, the more likely or unlikely your baby is to have Downs! Seems like a nice first thing to do to me, but yet, this wasn't even presented as an option. 

 

 

 

After telling the woman I would really prefer NOT to have the Amnio test, the counselor reminds me that we're only about half way through the pregnancy, and asks if I'd be wondering the whole rest of the pregnancy whether or not our baby had Down Syndrome. That's when I broke down. We had already decided that if our baby did have Downs, we'd continue with the pregnancy, and have the baby however baby came. So, in that sense, did we really NEED to know or have that test performed? The counselor didn't seem to understand why I wouldn't want this test, and continued her questioning. 

 

It was somewhere's in the middle of this questioning that we get a knock at the door — a woman with paperwork for the counselor. It was our paperwork. And actually... results from our NIPT scan. With all the testing that's done during a pregnancy, I really wasn't sure what had been done or not, so I really had no idea that we had already done the NIPT test — the second option the counselor had mentioned. And guess what? Results were NEGATIVE. 

 

As it turns out, these prenatal screenings often have false positives, and therefore, many women opt not to even get them! Had I known that, the decision to get the test would have been more of a conversation! We thought it sounded good, and said yes, not really understanding the full scope or how inaccurate and misleading they can be. This whole little fiasco could have been redirected much earlier, had the clinic had all the information in front of them. I honestly don't know where the mishap happened here, but why put us through this roller coaster of emotions before ALL the relevant records are reviewed?! 

 

With this new information, the energy of the room completely changed. The counselor even told us there was no more need for us to be there. There was no more need for an Amnio test, even though she did throw in an "if we wanted it..." — ya, cause we were really debating that one! Wow... 

 

All in all, the medical system, in my eyes, does a bunch of stuff, that you may or may not even be aware of. They charge you for what they want (doing extra ultrasounds for example that really aren't necessary), or taking these 3D photos (above). Due to the positive prenatal screen, we weren't going to have to pay for this Amnio test at all, and being doctors get paid by procedure, it kind of all makes sense there was so much push to have this procedure done. Extra ultrasounds and 3D images are cool, and exciting, and we're grateful for them, but never was there a question as to whether or not we wanted them. The ultrasounds were charged, and we did pay our co-pay for them (just to be clear, I'm not saying that ultrasounds aren't necessary, just saying they don't usually need to be done at every visit). The 3D images were not charged... and I'm glad for that, because I definitely wouldn't have paid for those! This is obviously my own personal preference. I'd prefer to spend my money on photos AFTER baby is born! 


We ended that visit with a 2+ hour anatomy scan, for a total of 5 hours at the diagnostic center! It was a long roller coaster, and hubs and I were happy, but exhausted by the end of it. 

 

In the end, I write this post, and share this story so that others can know a bit more about the inaccuracies of these prenatal screens. Not to say they're not good at all. I'm honestly not sure what I'd do next time. But, it would have been nice information to know ahead of time. Going back to my sister-in-law, she told us all of this, and told us not to worry even a minute before we got more information. She also confirmed, that negative results are more accurate than positives, and since we had one negative and one positive, it was more likely the positive was false, rather than the negative being false. Talking with her gave us peace of mind for that week or so that we had to wait for our counseling appointment and anatomy scan. So, I hope that if this happens to any of you out there, that you can know not to worry until further testing is done. We all know how much stress can effect things/pregnancy/getting pregnant... so let's try and reduce that as much as possible! 

 

I hope everyone is enjoying this holiday season! I hope to post some more photos soon!

 

 

Maternity photos above courtesy of my amazing husband, Simon Cordova (Simon Cordova Photographer). I was 31 weeks and 5 days then... so definitely a bit bigger now! 

 

3D images were from about 20 weeks. 

 

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abra klinger
photography

Los Angeles, California based newborn photographer, serving the greater LA area. Offering newborn (my favorite!), maternity, kids (watch me grow) and family sessions.

 

Reach out if you're interested, or just have a question - I'd love to chat! 

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