Genetic Testing anxiety

micah1

New member
I’m 7w+1 and 38 y/o (will be 39 when I deliver). Went for my first ultrasound 2 days ago and everything looked great (and ruled out an ectopic which was a HUGE relief). Scheduled my NIPT in 2 weeks (will be 9w) and second trimester ultrasound including nuchal translucency scan in 5 weeks (will be 12w+2) and honestly don’t know how I’m going to get through it. I’m trying to stay off Google but it’s so hard to have this uncertainty and fear, especially given my age. How did you handle it? Any words of reassurance or anything you can share? I’m trying not to get excited just because the first scan went well but its really f’ing hard.
 
@micah1 The fact that your baby has a heartbeat means you've already passed the biggest hurdle, and for the genetic issues, you have a way better chance of having a healthy baby instead of the alternative.

I would picture myself in a gymnasium filled with 300 people, 500 people, 900 people and think "what are the chances that I would win a lottery out of a room with this many people in it??". I usually don't win anything, so I feel like the chances of me winning a lottery of any number of people are usually zero 😁

Pregnancy is stressful, considering the information we have at our disposal, but remember, when the statistics say your baby has a 1 in 500 chance of having XYZ, it also means there is a 499/500 chance of not having it.
 
@micah1 I found it helpful to break down the stats and what they actually mean by looking at them in the inverse. I was 40 when I got pregnant and that meant a 33% chance of miscarriage. Which is scary as hell, but it also meant a 67% chance I would NOT miscarry. Risk of downs syndrome was four fold that of a 35 year old (.25% compared to 1%) but that four fold increase still only placed me at 1%. Downs syndrome is also not a death sentence, and not something I would automatically terminate for personally. The other trisonomies (the only ones I would for sure have automatically chosen abortion for) are much, much lower.

The early days were tough. But I am at 31 + 3 with a perfectly healthy little girl, who is active the whole day and she's at the 75th percentile. She has her dad's nose. She's beautiful.

Those fears don't go away; once you become a parent there's a part of your amygdala responsible for attention and a fight/flight response that opens more and never goes back to it's normal size. Even when your child is grown. These fears and anxieties are my brain and body doing what it needs to do to protect this growing baby. But setting that aside and trying to focus on the more logical aspects whenever possible was how I got through and get through.
 
@anaseini Thank you so much! Hearing those stats makes it so much more bearable, haha. I'm trying to stay away from google so i don't even know what the stats and % risk really is (or the inverse)
 
@micah1 This was me several months ago. Also pregnant at 38 and will deliver at 39. My husband is 48 so I was very much trippin. These tests weren't available to me when I had my first two children (14 and 9) plus I was younger and would have declined them anyways. Seemed irresponsible to decline them this time so we did it and everything was fine. The odds for a healthy baby are still very much in your favor!
 
@micah1 I had my LO at 38. I was convinced my kiddo would have genetic abnormalities due to my age, and literally cried when the NIPT came back normal. Then the next anxiety was waiting for the anatomy scan. Then I worried about whether or not I'd make it to term.

I'm prone to anxiety in general, and I found my regular coping tools insufficient during pregnancy. In my 3rd trimester, I finally decided to start Zoloft. I've continued with it since then (2 years now), and honestly, it's been a huge help for me. I still have all of the same thoughts I had pre-Zoloft, but they're easy to let go of. I don't spiral like I used to. My husband noticed a huge difference, too. I'm a little embarrassed that I waited so long to start medication.

I'm not suggesting this is what is right for you. Just sharing honestly what worked for me. Your anxiety about pregnancy could be entirely situational, and I'm not a medical professional. For me, pregnancy helped me reflect more on the anxiety I've always had. I realized that therapy wasn't cutting it. I knew that due to my anxiety, I was at higher risk of PPA/PPD. So I finally decided to medicate, and it's been the best decision I've made for myself in a long time. Postpartum was actually blissful for me. I'm a very happy parent to an almost 2-year-old.
 
@micah1 I’ve had three healthy babies all born when I was 35, 37 and 38….. the heartbeat was always my anxiety point so I’m glad you have that!!
 
@micah1 GIRL. I’m full of anxiety right now, I just did my blood work for my NIPT and genetic testing. My brother had a Muscularity Dystrophy and there’s a 50% chance that I could be a carrier. So on top of all the other possible conditions I’m at risk for considering my age (I’m 40), I’m terrified of the results. This is our first and will be our only child. I just want everything to be okay. 🙏
 
@aspenoden Sending positive thoughts, wishes and vibes your way! It's such a stressful time but i hope we will all hear positive news. We're in the same boat, this is our first and likely only which makes it all the more nerve wrecking
 
@micah1 Something that helped me, it may seem counterintuitive, but is to actually consider how you would feel if any of the things you're worried about came to fruition. Would it hurt less because you worried about it ahead of time? Absolutely not. So what does worrying accomplish? Nothing. It helped me to relax to think about my worrying as a pointless waste of time.
 
@micah1 Hey, I'm 24w and 40 years old, will be 41 when I deliver. Had all the same anxieties about genetic abnormalities especially given my age but got through the anatomy scan and having a healthy baby 🥰 hope that helps a little!
 
@micah1 Please remember NIPT is NOT diagnostic. It gives you probabilities to inform you of whether or not you should do an amniocentesis. That is the only test where you should make a decision about your pregnancy. Please frame it in your mind that this test is just to see if you should do a further invasive test. Lots of people get the amniocentesis and it shows no issues after NIPT flags them. There are too many false positives in NIPT for it to be diagnostic.
 
@micah1 I'm 36 and will deliver at 37. I'm 9w6d and had my first prenatal appointment today. I, too, was super anxious before my first ultrasound but felt better once I knew it wasn't an ectopic pregnancy and saw the heartbeat.

Just a warning about your NIPT being scheduled before 10 weeks, it might come back with insufficient fetal fraction of DNA. They will just re-do the test if that is the case. As a fellow worrier, I just wanted to give you a heads up!
 
@phillipk Thanks! My OB/clinic is the one that scheduled my NIPT so I’m sure they’re aware of timeframes. I doubt they’d ask me to schedule it then if they felt there was a risk of insufficient fetal DNA
 
@micah1 I did prenatal testing with both pregnancies (one pre 35) and now this one. I need full information so I can make informed decisions for my family. No matter what you’d do with the information, having it is valuable. Remind yourself that most people get good news and that you will cross any other bridges when you get there. Not getting the tests just denies yourself information, it does not protect you from the reality of the results. Having a heartbeat and properly located pregnancy is a great start.

Im also a huge worrier, but I’ve learned that part of parenting is just learning to ride the waves of stress and anxiety and manage them for our own sanity and the wellbeing of our children.
 
@micah1 Hey, also in the club on 38 now at 31 weeks, it's a coins toss if I'll deliver before, after, or on my 39th birthday.

This is an IVF baby, so the genetic tests started before they were inside me! In some ways that made the NIPT and early scans easier, knowing this little cluster of cells becoming my son was already deemed euploid. In other ways...yeah of course there's worry.

I told my therapist when this transfer was successful that I was trading a few more months of grief and clarity for a lifetime of worry and uncertainty. The worry never goes away. I'm a FTM but my parent friends have impressed that on me.

Now it's worries about tests and complications. Soon it will be worries about SIDS and falls. Then there is daycare malpractice and school shootings. Then they grow up and make awful choices. It's a life sentence of worry.

Complications happen regardless of age. A certain amount of worry is valid and inevitable. I just try to dilute it with the gratitude that this round worked, and the love and hope I already feel for LO, and the faith that I have enough life skills to handle surprises better than I would have 20 years ago.
 
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