When your baby's not "OK"

10.12.2012

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


72 comments:

  1. I'm praying for you and your sweet baby.

    ReplyDelete
  2. Praying for you and this sweet baby!

    ReplyDelete
  3. Keeping you and your family in my thoughts!

    ReplyDelete
  4. Praying for you and your family. Hang in there!

    ReplyDelete
  5. Prayers, love, good vibes, and baby hugs to you!

    ReplyDelete
  6. Keeping you and baby in my thoughts!

    ReplyDelete
  7. you know I love you and am always thinking/praying for you. Email me/text me anytime.

    ReplyDelete
  8. Thinking of you and your family! Hope you find the perfect doctor!

    ReplyDelete
  9. Thinking of you!! We had an amazing high risk Dr in Annapolis. Dr. Sweeney. I highly recommend him. Everyone I know has gone to him as well.
    Good luck! xoxo

    ReplyDelete
  10. I'm sending good thoughts your way, I hope you find a great specialist who delivers you a healthy baby in a few months! Be strong!

    ReplyDelete
  11. Sending prayers for you and your sweet little baby. Stay strong and know that God has a reason for everything he does. He will get you through this!

    ReplyDelete
  12. sending you LOTS of prayers! xoxo

    ReplyDelete
  13. I've never heard of that before. Definitely nerve wracking. Sending you lots of good thoughts for a healty, full term baby.

    ReplyDelete
  14. Positive thoughts and internet hugs coming your way.

    ReplyDelete
  15. *hugs* That is scary, if you need to talk let me know! I can't relate (having never had kids or been pregnant) but can offer a loving ear! Sending good energy and love your way!

    ReplyDelete
  16. I have never heard of what you have before nor have I heard of being dumped by the doc - usually its the doc being dumped by the patient. Stay strong and know that you will get through this!

    ReplyDelete
  17. I've never heard of what you have but I will be praying that the baby will be ok

    ReplyDelete
  18. You'll be in my thoughts and prayers! I wish you the best with everything from here on out!!

    Xo-L

    ReplyDelete
  19. Keeping you in my thoughts, take gentle care.

    ReplyDelete
  20. I am so sorry. Although I have never heard of it before I can sadly relate in another way. Stay positive and as strong as possible for you and the baby. Thinking of you.

    ReplyDelete
  21. I'll be praying for you and the little one! I hope you find a doctor you trust soon to give you a little peace of mind.

    ReplyDelete
  22. Keeping you in my thoughts and prayers for sure :) You know, sometimes I think that it is annoying when people say that because they have no idea what you're going through and very few do with the statistics you shared. Just know that although I have no idea what state you're in or what it feels like, I am thinking about you and wishing you and your family all of the best.

    XO
    Kait

    ReplyDelete
  23. That sounds scary. You're in my thoughts!

    ReplyDelete
  24. Praying for you and baby. I hope you find a better high-risk specialist who can give you more answers and guidance.

    ReplyDelete
  25. I will be keeping you and yours in our thoughts and prayers!

    ReplyDelete
  26. I hope that everything turns out okay. My sister is pregnant and she is diabetic, so every little thing that happens scares us all. I know that it can't be fun to be so worried about your lil' babe. I'll keep you in my prayers. :)

    ReplyDelete
  27. Add me to the praying for you and thinking of you list. I'm sorry you got such scary news, I hope everything turns out just fine!

    ReplyDelete
  28. Prayers that the baby is doing just fine :)

    ReplyDelete
  29. I was just thinking this morning about my love/hate relationship with placentas. With my first pregnancy my placenta nourished and gave me my perfect baby boy. With my second pregnancy, my placenta grew like a tumor and over took the space in my womb, taking my baby away from me at ten weeks. This time there is an amniotic band attached to my placenta, causing potential growth restriction. Not sure why I am sharing all this in a comment, but just know that I will be thinking of you and your baby daily, and praying that your placenta gets its act together and starts doing what it is meant to do. Grow baby grow! I did a quick search on baby center, here are some posts I found: http://community.babycenter.com/find/g?cx=000086970581329932031%3Amzjuupyzieg&cof=FORID%3A9&ie=UTF-8&q=low+PAPP-A

    ReplyDelete
  30. Thank you for sharing your story, I had never heard of it before either.
    Definitely adding you and your sweet babe to my prayer list.

    ReplyDelete
  31. I wish I could offer more insight and information on this for you, but all I have to offer is my thoughts and prayers. I will be thinking of you and your little bean, hoping it grows as it should.

    Fingers crossed you find a MUCH better doctor who won't dump you!

    ReplyDelete
  32. Thinking of you and sending positive thoughts your way :)
    Smile...

    ReplyDelete
  33. Praying for you and your sweet baby.

    ReplyDelete
  34. Praying for you and baby! I have never heard of that, but I did have an IUGR baby due to severe pre-eclmapsia. She was delivered at 27 wks and was the size of a 24 week baby. She is now a beautiful perfect 10 yr old.

    ReplyDelete
  35. Everything is going to be alright...I know it in my heart...praying for some peace until your next appointment!

    ReplyDelete
  36. Being a mom, i can only imagine how u feel. Stay strong n keep the faith! Will keep u in my prayers xx

    ReplyDelete
  37. I am SO sorry to hear about this!! I can only imagine how scared you are. Being a mama to a baby who only had a 10% chance to now being healthy and strong, I can say just pray and be positive! I will do the same for you and your sweet baby!! Please keep us posted!!

    ReplyDelete
  38. I'm so sorry to hear your news! You and your sweet baby are in my thoughts and prayers!

    ReplyDelete
  39. praying for you and your sweet baby!

    ReplyDelete
  40. I can't offer advice, but I can offer a prayer. I hope you find a great doctor soon!

    ReplyDelete
  41. I am thinking good thoughts for you and baby and saying prayers too.

    ReplyDelete
  42. Sending lots of prayers and positive thoughts your way!!!!!

    ReplyDelete
  43. A friend of mine was told all sorts about her baby from , "you should abort now as it he will be so deformed" to "he won't grow at all". We prayed, the baby grew and she gave birth to a beautiful baby GIRL that was perfect in every way. Hang in there. Lots of positive thoughts and prayer. Hard I know when you are the mom, but look after yourself well, rest and let your body do what it does best. Lots and lots of love from over the pond. Claire xxxx

    ReplyDelete
  44. I haven't had abnormal testing but my heart is with you!

    ReplyDelete
  45. I would be terrified...but keeping it positive is the best and let nature do it's magic.
    I wish with all my heart that everything goes well.

    dailylivingingeneva.blogspot.com

    ReplyDelete
  46. I am sending loving thoughts and prayers to you dear!

    ReplyDelete
  47. Although I can't relate because I've not had a child yet I can only imagine how you must be feeling! Praying for healing, comfort and peace for you at this very moment.

    ReplyDelete
  48. i know how devastating it is to hear your child is not ok...sending prayers your way...

    ReplyDelete
  49. I found you via the Meet and Mingle blog hop, and I love your blog (and am now your newest follower). I was in tears for you after reading this blog post. My thoughts are with you and your family, its not easy being told anything but good news when it comes to our children. Our daughter had Syndrome X (involving a chromosomal anomaly), and unfortuantly we lost her soon after our 12 week scan. I believe that god has a plan for all of us, and I'm praying that the angel growing in you will stay with us here on earth. Big hugs during this tough time.

    Kylie from Random Drawers
    http://randomdrawers.blogspot.com.au/

    ReplyDelete
  50. Praying for you. I know it's very scary to not be able to do anything about it.

    ReplyDelete
  51. Praying for you! I am so sorry to hear this. I know it is scary not being able to do anything about it. I hope it all turns out ok.

    ReplyDelete
  52. :/ you are in my thoughts girl.. You and your little one. Keep your chin up!

    ReplyDelete
  53. Jamie I am so sorry. I can't imagine what you are going through. our good friends just did genetic testing on their 17 week old baby and found out is has a severe case of spinal bifida and they think it is so severe the baby won't live much longer. I have been thinking about them nonstop and just can't imagine. I am so sorry and will be praying for you and praying your baby keeps on growing.

    ReplyDelete
  54. Prayers going up for you! Praying you find a doctor who is knowledgeable and you feel comfortable with.

    ReplyDelete
  55. Oh my, I am so sorry. I am praying for you and your sweet baby. We were told our son had Trisomy 18 and would very likely not survive, now he's 8 and perfectly healthy. I'm sure that doesn't really help, but just wanted to share there is hope! You will both be in my prayers for good health and peace!

    ReplyDelete
  56. **HUGS*** Jamie, I'm grateful for the laughs you have given us and also being vulnerable here. I'll pray that everything will be alright for you and your little bean. That he/she will get the nutrients to grow big and strong!

    ReplyDelete
  57. I am sorry you got this news :( my girlfriend did have low PAPP-A discovered with the NT scan b/w, but she has two uteruses. So they expected a growth restriction. It did mean her baby was pre term, so she was monitored carefully by a perinatologist. I see it that it's good you had the testing, this way you can be monitored and have a healthy pregnancy. I hope everything is ok.

    ReplyDelete
  58. My heart is going out to you! I know that you are strong and that you will most likely pass that strength on to your baby. I have complete faith in you and the little nugget, so lets get this baby to grow!! {{HUGS}}

    ReplyDelete
  59. Hey, I found you on the Friday blog link up. My baby was born 1 month early after a high risk from hell pregnancy....the high risk dr. was horrible. But, my regular gyno was great and always calmed me down. My baby boy didn't move hardly at all, was tiny, but after he was born, he plumped up and grew like he should. I had a 2 vessel cord, where the nutrients can't get to the baby. (yay, me!) Anyway, the pregnancy was stressful, but even with the early arrival, things are good. He has Sensory Processing Disorder but it's way more manageable than the horror stories they gave me at the high risk dr.'s office. So, rest, eat and enjoy your daughter:) My thoughts and prayers are with you during the rest of your pregnancy!!

    ReplyDelete
  60. I am really late commenting on this but I just read your 21 week update and then found this post. I received a phone call on Thursday following up on my Down Syndrome testing and the past couple of days have been an emotional rollar coaster. I was told I have an increased risk this pregnancy though nothing is confirmed yet. I can so relate to just wanting a healthy pregnancy and how I am disappointed and stressed that it might not work out that way. i can't imagine how your dealing with PAPP-A (never heard of this until now).

    You will be in my thoughts and prayers and thanks for sharing your story.

    ReplyDelete

I love to hear your thoughts! XOXO

Related Posts Plugin for WordPress, Blogger...