When your baby's not "OK"

I opt for the 12 week genetic screen for my babies.  Do I do it because I want to know early on if my baby has Downs Syndrome or another chromosomal abnormality?  Of course.  But, do I know that, of course, my baby is fine and really I just want the free ultrasound?  Yeah, pretty much.  

I have healthy babies.  My babies are strong and smart and grow normally.  I work out and eat well and follow all of the suggested pregnancy guidelines (even the silly ones).  My babies are born pink and perfect after a text book, medication- free delivery.

What happens when those ideas, expectations and dreams are dashed by one simple phone call?

I have low PAPP-A.  Never heard of it?  I hadn't either until that dreaded phone call.  Luckily and thankfully my sweet baby tested "normal" for chromosomal abnormalities.  The PAPP-A is the only concern... So far.  

So, what does low PAPP-A mean?  Its a placenta hormone disorder.  Abnormally low PAPP-A (putting the pregnancy into the "high risk" category) is considered less than 5%.  Mine is less than 1%.  The main concern with this disorder is that the baby just might not grow.  It might have trouble getting the nutrients it needs through the placenta and just not be able to grow. The first time we'll check to see if the baby is growing is about 18 weeks.  It will be monitored closely every few weeks after that.  

On top of the growth restriction, having low PAPP-A also significantly increases your chances of miscarriage, preeclampsia, early delivery (before 35 weeks), and sudden fetal demise.  

It is just one of those bad luck things.  I didn't do anything wrong and there is nothing that I nor the physicians can do to fix it.  If the baby doesn't grow normally, they hope it stays alive until it would be viable to deliver (32 weeks if the baby has severe growth restriction).

I've only spoken with one other person who had this disorder and she lost her baby at 18 weeks.  

To say that I am worried is obviously an understatement.  I'm terrified of this sweet baby just dying inside of me without warning.  And if it is not receiving the nutrients that it needs to grow, how can it possibly be "normal" later?  Why can't I do anything to help it?  

I am currently shopping for a new high risk specialist after an almost comedically horrendous visit yesterday.  Have you ever been dumped by a doctor?  Now, I can say that I have, but that's a story for another day.  

I appreciate your kind thoughts and will update as we find out more.  If you know anybody who has had low PAPP-A, I would love to hear about it (good or bad).    

Sent from my iPad