I am the .001% (heartbreaking A/S)

golfingdarwinfish · July 2013

or whatever the hell Sequenom's false negative rates is at this point in time.

MaterniT21 told me it's a boy. This baby is presenting ALL girl. Has none of the classic traits of XXY.
She's measuring 2 weeks behind. My peri thinks there is a chance she trisomy 18. Sequenom gave me the all clear on everything.
My peri is fairly certain she has a neural tube defect - right now she has Dandy-Walker Syndrome.
I'll have the initial results of my amnio tomorrow, the next set by the end of the week and the complete set next week. The microarray will take a bit longer.
I've been referred to Columbia's Center for Prenatal Pediatrics and am waiting for them to call me with my appointment date. I'll be having a full day of testing there.

This is devastating, heartbreaking, whatever you want to call it. Right now I'm really just numb. I cried during the ultrasound when I saw how off she (?) was measuring. When the tech showed the genitalia I stared at the 3 lines wondering WTF was going on, thinking I was in the Twilight Zone or something.

MamaGrillo · July 2013

I'm so sorry. Prayers right now.

mimers07 · July 2013

I wish I could find the words to tell you how very sorry I am. I will keep you and your little one in my thoughts and prayers.

GeauxM&V · July 2013

VC, my heart goes out to you. You have been such a rock for all of us here, and I hope we can help you through this difficult/devastating/scary time. I can't even imagine how I would react, and there really are no appropriate words that I could say to ease your emotions right now. I will be praying so hard for you and your family.

northport6 · July 2013

My heart is breaking for you -- absolute thoughts and prayers are with you and DH.

sabriel1 · July 2013

I am incredibly sorry to hear this

I've been following your story and keeping you and your family in my thoughts. I will continue to think of you all and I hope that the amnio results in the best possible scenario for you all

mightymousy · July 2013

Oh hunny, there are no words, I'm in tears just reading this update, I'm so SO sorry you're going through this :[ FU universe, not flucking fair.

lemlemlem · July 2013

I am so sorry you have to go through thus. My heart hurts for you. I know there is not much to say that will help, but you are in my thoughts.

KELLILOVESJOSH · July 2013

I'm so sorry. I will be thinking of you and praying.

golfingdarwinfish · July 2013

KateVA:
I am so sorry! Do you think you got the wrong maternit21 results back? I wonder how they could say 'boy' if there are no y chromosomes? You will be in my prayers

I'm worried they either messed up samples or sent me the wrong report. I truly hope that they didn't send my report to someone else, especially if the baby does in fact have trisomy 18.

I've had my own karytotype done and know for certain I don't have a Y chromosome normally.

74dragonfly · July 2013

I am so sorry. Since I too had great tests and was surprised at a/s I understand your emotions. Sending you a big hug and prayers for your baby.

bethLenell · July 2013

VC You are in my thoughts and prayers!! Praying that the amino comes back with more answers for you! Sending strength, healing, and encouragement your way!!

Mills0309 · July 2013

I am so sorry you are going through this. You, your husband, and LO are all in my thoughts and prayers.

esf60 · July 2013

My heart is hurting for you right now. I think it just dropped to the floor. There really are no words. Thinking of you and your sweet husband right now and sending prayers your way. Thank you for sharing that with us, I can only imagine how hard it was. We're here for you.

gcama85 · July 2013

So sorry to hear this. I'll be sending positive thoughts your way and hope the amnio provides more answers.

grace_ann · July 2013

I am so sorry my thoughts are with you

lisab613 · July 2013

I am so sorry VC. I wish there was something I can do for you, but know that I'm thinking of you.

blainethetrain · July 2013

Thinking of you.

google123 · July 2013

I'm sorry VCgolf. This is the second time I've read online (forums) about sequenom being wrong. Another lady (different forum) had normal MT21 results, her baby girl ended being born with Downs. You really need to file some complaint, or make sure that sequenom addresses the situation and has a formal inquiry and report on this. Don't let them disregard it, as they promote their (99.9% accuracy).

I'm sure this is devastating news. I hope you will get some clear answers from your amnio. One of my best friends had a T18 fetus and had a termination. She has had 2 healthy babies since. It's a very difficult and personal decision to make, and I'm sorry you have to go through all of this. I hope you'll be OK.

SarahDavis83 · July 2013

I am so so very sorry, VC. This is heartbreaking. ((((((HUGS))))))

MamaHanna · July 2013

My heart just dropped when I say that title. I am so sorry VC! I hope this is just another big mistake and things are not as bad as they seem. I just said a little prayer for you and your baby. More to come!

F47 · July 2013

My heart is breaking for you VC. Please keep us posted if you feel up to it. My thoughts and prayers are with you and your DH.

MalDR0418 · July 2013

I am truly so sorry to hear this. You, your husband and sweet little one will be in my prayers. Hopefully you'll get clear results very soon.

sameoldash · July 2013

oh, sweetheart, i'm so, so sorry to hear this. i'm crying and praying for you guys. i hope somehow the results were wrong and you get better news with the further testing. ((((((hugs))))))

please let us know if there is anything, ANYTHING, at all that we can do for you right now.

ermimac · July 2013

Oh, VC, I am so so so sorry! You are in my thoughts and prayers that you start to hear better news soon!

Islandgirl1129 · July 2013

Keeping you in my prayers. Hopefully the amino will give you clearer answers.

texasmommie · July 2013

My heart is breaking for you VC. I am so sorry you are going thru this. My thoughts and prayers are with you, baby and family. I pray for better news of your amnio results. Hang in there and try to stay positive.

Tigger & pooh · July 2013

ugh, I am so sorry. I unfortunately have been in a very similar place as you. If there is anything I can do please let me know.

Laumb11 · July 2013

I am so sorry to hear this. Thoughts and lots of prayers for you are you family.

insertclevername · July 2013

I am very sorry. Hopefully you can get some more definitive answers soon. You and your baby are in my thoughts.

okate0213 · July 2013

That's a lot to take in at once, I am very sorry you are going through this. Hugs, you get the real answers you need from the amino and other testing.

BeachMommy2B · July 2013

I'm so sorry you had to get this devastating news.

AUmom2009 · July 2013

I am so incredibly sorry. You and your family are in my thoughts and prayers.

TheSloppySwish · July 2013

So incredibly unfair. I'm in tears for you.

Shadow512 · July 2013

I am so so sorry. Prayers for you and the baby.

swirl25 · July 2013

Oh, no.....I am so, so sorry. Sending tons of T and P's to you.

watercolor5 · July 2013

What scary, devastating news! I'm so sorry you're going through this. Your family is in my thoughts and prayers.

jmb527 · July 2013

VC, I am so, so, so sorry to read this. It's giving me chills and I could cry

I know you will be getting the best medical care and I hope you get some more answers and a plan for LO. I am thinking of you and hoping for the best here, and I'll be praying too!! I wish there was something we could do other than give creepy internet hugs, but that is it for now (((hugs))).