Hi everyone...

My issue may be off putting to some, and probably not an issue most have dealt with, but it is something that not only infects all joy with my 🌈 pregnancy, but also just really really really irritates me when other non-traumatized moms make comments about it.... here it is:

My first son was born with mysterious congenital problems, never picked up by any prenatal testing, ultrasounds, etc. Nothing was ever picked up even after he was born on 8 different genetic panels. He died at 9 months old after spending all that time in 3 different hospitals. We lost our home our jobs our money and ultimately our child. During the course of all the testing and results we learned the hard way that doctors had no faith in any of the tests we thought were pretty definitive. Anytime we referred back to a tests results, we were met with the “yeahhhh...butttt..... those tests are just.....” 🤷🏼‍♀️. Like wow ok sounds great? Why’d you even do them then? We waited weeks or months for some of those. Like literally every test we did, every test I said “well we did that and it came back normal” was shot down and replaced with some NEW test; to not have faith in later.

This has obviously created a significant amount of medical distrust on our part, and nearly zero faith in all the tests they shove down a mother’s throat while she’s pregnant these days, leading you to believe nothings wrong, or scaring you to death w wrong results. Most of the joy of this new pregnancy has been torpedoed for me personally. Since we had so many issues postpartum they are all over me w tests. Every appointment is another appointment to try and find something wrong. I do one test, and immediately make an appointment for another. I get results for one and immediately am waiting for more. I’m never just happy and pregnant. And this isn’t just for me, I honestly feel that this country has turned pregnancy into some weird roller coaster of fear and relief that just goes and goes, up and down, until a baby’s born. So thats all the part of my own personal mental issue with my past and my present.

The second part is my issue w non-traumatized mom-to-be’s that I constantly see on this app and many others (they’re all the same), is just post after post about how relieved everyone is when their baby is (supposedly) “normal” simply bc some stupid NIPT screen said they were for like 5 or 6 main chromosome issues. Big whoop. Not only did my sons NIPT say everything was fine but every genetic test there after also said he was fine and “normal”. He wasn’t. We too were “relieved” at certain points. I want to scream at these naive people that these tests are shit. And even if your child is chromosomally normal, they could end up w severe autism, or many other medical issues I have had the reality of discovering exist. Moreover, saying how relieved you are that your kid doesn’t have T18,13, or 21 is incredibly small minded not only bc it diminishes the experience of parents who weren’t as lucky as precious you, but also bc that’s literally 1% of what’s out there genetically that your child could have. Those aren’t the only f^ing things on earth to test for to be “relieved” your kid doesn’t have. Hearing mothers who are just the typical care free, never experienced a day of adversity moms, piss me off to no end. My little boy was “healthy” by all stretches of medicine. Until he wasn’t. I want to suck the joy out of their ignorant relief so badly. I want people to appreciate life without being tethered to tests that are inherently flawed. I don’t care about 99% accuracy rates. Bc at the end of the day if you try to go back and use those tests (that 99.99% accurate👍🏼) as a leg to stand on later, those very same tests you were posting all the internet that you’re so relieved were normal, you will be told they are shit. And that is a real mind f^ck, let me tell you.

I needed to get this all out bc I just can’t stand it anymore with these people yammering on and on about how relieved they are their kid is normal, when they actually have no idea really. A CVS and amnio both would have told me my son was “normal”. Yes of course he was a rare instance but when you experience rarity it is no longer rare. In fact, stuff going wrong is far more common than we are led to believe. It is actually terrifyingly more common than we are led to believe. Why do you think they do all this shit?

I vent about this topic in the hopes of waking people up from the cloud 9 la la land of ultrasounds and tests that you think are so great and to stop parading your relief around bc there are families out there who have seen hell up close, a hell every test on the planet told them wasn’t in their future. I tell about this to wake people up and spread awareness about other mothers’ experiences and how it only takes one experience like mine in life to see so much clearer how it all really works. I was enlightened to a lot of truths I never asked to learn. I wish I hadn’t been so naive and I wish I’d never had to learn otherwise. But I did and now I don’t know what to do with all the realizations.

I get really bummed and sad and defensive when I see post after post of all the relieved preggos citing one stupid test for four common issues. Just cuz your kid doesn’t have Downs doesn’t mean anything. And not only that, but I have seen hell and I will tell you Downs would have been a GIFT compared to what my little boy got handed. And it Disrespects all the families out there with children with Downs who wouldn’t change it for anything. I just want the naivety to stop, the false hope put in tests to go away, and the open relief that lucky you doesn’t have to go through something hard will cease forever.

:(. I don’t vent this to insult or depress. And

It’s a fine line,lm aware believe me. No one wants to hear about it, no one’s interested in my rare experience w tests. “Well ours was normal and that’s what we’ll

go with”. The brain won’t even let you really go there, and I get it. I totally do. I’m not asking the world to get on its knees and be depressed for 9 months, depressing the shit out of anyone who walks by, or telling their doctors that someone online told them that the test they took isn’t reliable. That’s not the intention. The intention is to just open eyes to the limits of medicine, to the limits of doctors knowledge, and the experiences and lives of other families who were blindsided later, leaving all that naive “relief” in the dust. I don’t actually believe this post will change anyone’s views and it’s certainly not something I scream from rooftops bc again, no one cares and I’d just be thought of as the depressed mom who lost a child and is trying to bring everyone else down too. And that is so NOT what I do. I never purposely try to do that.

I have to work really really hard at being happy about anything in life anymore, on top of trying to reboot my faith in then medicine and testing that’s at every turn, constant reminders of the last time everyone was so f* ing sure things were normal. I don’t know what I want. I just wanted to vent this really. I’m almost at the 3 month mark in my rainbow pregnancy and it’s a struggle to be grateful and hopeful. I have really bad days sometimes and they end up spewing out of me like this on some <a href="https://play.google.com/store/apps/details?id=com.glow.android.nurture">pregnancy app</a>.

I’m sorry this was so long, and maybe at times it was harsh and unnecessary. I hope even ONE person says omg I feel

Exactly the same way. And even if no one feels the same way, I hope one person can say I never thought about how dismissive and naive it is. I don’t know. 😞 I also hope I don’t get skewered on here by comments. I’m took a big risk by blasting this out there.

Thank you so much for reading this and just allowing me this outlet.