I am 14 weeks along with my 2nd baby boy. At around 11 weeks I got the Panorama Nipt test done (which tests for chromosomal abnormalities such as your babys risk of Downs Syndrome) I was not at risk for Downs but we opted to do the test to find out our babys gender :). A week later we get a call from the Dr. and she went down the list of Chromosomal abnormalities and said my baby is at no risk of any of them :) and that we are having a boy! A day later I went in for my baby growth ultrasound and blood test. Our boy was moving around so much and we were so happy to know his sex as with our 1st born we waited until 20 weeks to find out the gender via ultrasound.

A few days later I got a call from my Dr. saying that while I'm going to see her in a week (now a few days away) that she had to call me because my last blood test had shown that one of my pregnancy hormones are low which is indicative of Down Syndrome but she isn't concerned because Nipt results are the most accurate tests around and my Nipt said that my baby doesn't have downs, But that I will need to have more ultrasound sonograms beginning at the end of my 2nd trimester to make sure my baby is growing right.

I was sooo confused as I was given no additional information, really. So I asked her what hormone is this and she said I have Low Papp-A with low/no risk on Nipt for Downs. I kept asking questions like is it something I have done? What can I do? Etc. She said it's a random gene that just happens and the only thing we can do is just keep monitoring you. But we see no reason to worry. .......

So I did my own research ( no, not just Dr. Google) but serious research in books and via support groups and noooo!! there is sooo much more to Papp-A then my Dr. even told me and what's really sad is not only did she not read me my precentile, or levels but if I didn't ask her what this hormone was I wouldn't even know that I have low Papp-A.

MOSTLY every woman with Low Papp-A with no risk of downs like me, gives birth prematurely and/or gives birth to babies of low birth size and birth weight putting them into NICU for sometimes over a month. And some babies aren't strong enough and don't make it out of NICU. Which is one the best case scenrios.

Low Papp-A also puts me and baby at even higher risk of preeclampsia which is the number one cause of death in mom baby during labor and delivery (And my blood pressure is already elevated throughout this pregnancy) so now I have two preeclampsia risk factors. Being that I also started this pregnancy with high level PCOS which automatically put my at higher risk for many things.

And there are many babies who either stop growing in utero, or develop severe brain damage in utero because of Low Papp-A and mom gives birth to a still born (dead baby)

:( or a baby who doesn't live for too long after birth. On the worst case scenrio side.

Others whose NIPT comes back for risk of downs with low papp-a have a baby born with down syndrome Or severe mental retardation.

PAPP-A is a large glyco protein produced by the placenta and has several functions, including prevention of recognition of the fetus by the maternal immune system, (so your immune system doesn't kill baby), regulates fetal growth etc.

A low PAPP-A is therefore descriptive of poor early placentation resulting in complications such as fetal growth restriction, fetal demise (death), preterm birth and preeclampsia in the third trimester. Etc.

While I understand my Dr. Wanting to keep me calm to not worry a pregnant woman, I'm so mad that such a rather rare and Serious condition I have wasn't dicussed with me futher. Every single support group I've joined for low Papp-A had people asking me what my precentage and levels are which I have no idea about because my dr. Didn't give me any information about my condition and how moderate or severe it is.

I'm also not alone I see in Drs. not warning Low Papp-A patients about the risk factors even though every single person who had a Dr. Who said not to worry, who I've spoken to has had babies with complications because of their diagnosis. Which is sad and infuriating. Each person also so far had to do their own research and has had a nonchalant Dr. as well and some even wound up with babies who have died because of such bad complications or had their baby in nicu for months.

Just because my baby will most likely won't have downs syndrome why isn't my dr. Concerned about the much more serious complications of preterm labor, low birth weight and size and fetal death?!

There have been few and far between moms I've spoken to who have had Low Papp-A and full term healthy babies (again few and far in between) but those are also mostly people with levels and percentages in a better range. Plus with my many other complications of pregnancy such as my PCOS with hemorrhaging cysts ontop of that, why wouldn't my Dr. be forthright with me? I'm seeing her on Thursday and want all my information read out Clearly! Especially since monitoring of growth doesn't begin until the end of the 2nd trimester and I'm just starting mine.

I typed out my story in hopes to find any moms out there who have low papp-a as well with no/low risk Nipts. This diagnosis is more rare than I thought because it's hard to find others out there who have it, to talk to. Or finding someone who's still active to talk to.

I am admittedly scared, and do feel helpless as there is nothing we can do but pray. Talking to others who have been through it or are going through it is the only thing that helps. Please reach out ❤❤

I've tried posting my story in many groups now such as general pregnancy and other moms due in October in hopes to find another low papp mama to talk to :(.