Friday, July 18, 2008

I'm really scared.

I did my first trimester screening, which was a combination of the ultrasound and blood work. These two tests account for 85% accuracy in detecting Down syndrome and 90% for trisomy 18.

We were able to decrease the baby's risk for trisomy 18, which is 1 in 8,100 now, but unfortunately, the baby's risk for Down syndrome has increased to 1 in 56.

This means we are 85% certain the baby has a 1.8% chance of having Down syndrome.

I know the statistics are low, but usually when you have these tests, it really decreases the chances. The risk for simply my age having a baby with Down syndrome is 1 in 65, so the fact my blood results increased the chances, well, my heart is breaking.

If anyone is curious, the results were:
(measurements are in MoM = Multiples of the regressed Median)
Age: 35
Nuchal Fold: 1.6mm (they want it to be under 3mm)
PAPP-A: .57 MoM (1 is average)
free B-hCG: 2.07 (1 is average)

I need to know what we are dealing with. The genetic counselor was able to get me scheduled for a CVS (Chorionic Villus Sampling) on Tuesday. This test has a higher miscarriage risk than amniocentesis, 1% vs .3%, but the longer I wait, the more stressed I'm going to become. I hate that I'm taking such a huge risk, but then again, I know how my mind works and I know this will be the best course for me to take.

I'm really scared. Really, really scared.

59 comments:

Jewels said...

I know your scared hun, I'm scared and I haven’t had a test yet (3 more weeks), I want to say (Not to discount your fear) I have a feeling your baby is perfectly healthy, I hope I'm right (we all do) but I'm holding your hand (cyber hand) and thinking about you. I've read a little on the tests and watched some video's from the library, I remember them stating something in the lines that many times the numbers are a little off, which raises suspicion, but everything ends up totally okay, So I'm holding on to that for you, and hopefully my self too if things look funny with my test, but you'll have to remind me of that when it’s my turn.

~HUGS~HUGS~HUGS~

KatieM said...

Oh hun, I am so sorry you have to be faced with this. I will definitely be thinking of you over the next week as you go through the CVS and then await the results.

Martha said...

I'm so sorry you have to go through this. I'm hoping the CVS has the best and happiest results. ((Hugs))

Sugar&Ice said...

You're in my prayers, Nancy. Even though I'm sure things are just fine, I'd be nervous too. It's a mom thing I guess.

MrsSpock said...

Ick. Hope everything turns out OK.

Kaci said...

Oh Nancy, I am sorry you have to deal with this. The worry never stops, but just take a look at all the hurdles you've already come through - successfully. I'm praying this is just another bump in the road. (((hugs)))

Miss Tori said...

((((((((((Nancy))))))))))

I will be keeping you and your LO in my prayers. I'm sure that this isn't easy, by any means. I'm sorry that this is so nerve wracking and frightful.

Amber said...

Big hugs mamma! We are al here for you...keep us updated!

waitinginline said...

I am so so sorry that you're having to deal with this. I've also heard of more than one person having a false alarm with the triple screening. I'm wishing this for you. (((hugs)))

jenn said...

Nancy I am so sorry that you got these results & I am here with & for you as you go through this. I for one am glad you are going to (hopefully) ease your mind quickly. I also have a feeling that your little one is just fine, but you will still be in my thoughts this weekend & upcoming week.

Poltzie said...

I'm sorry Nancy. I'm not sure why you have to deal with this but I do know that you are strong enough to do it!
Good luck!

waitingforbabyk said...

Oh Nancy I am so sorry you are going through this. I will be praying for you, your baby and your family.

Leah said...

Oh Nancy, I'm so sorry that you are worried. I know we all hate it when idiots say things like this, but I really do have 2 friends who had shitty NT measurements and/or bloodwork numbers that went on to have uneventful CVSes or amnios. I will have everything crossable crossed that the CVS is safe and easy, and that the results are entirely reassuring.

Anonymous said...

i'm sorry you have to go thru this. i'm sending you lots of cyber hugs and hoping that everything will turn out fine. out of curiosity, and please forgive the frivolity of the question, but can you find out the sex with a cvs as you can with an amnio? and would you?

~christie (slacker001)

shawn said...

Those percentages are sooooo low, though I totally understand why you're freaking out. Just to play devil's advocate (and nothing more), is it worth the risk? You already determined that you would not terminate the pregnancy if your baby did have a disorder and unlike something like cystic fibrosis where you can start treatment right away for the baby there isn't any treatment for a Down's baby so what does it matter if you find out now or 6 months from now? Plain and simple: Is the risk of miscarriage worth just knowing whether or not your baby has Downs?

L said...

The new thinking on CVS is the miscarriage rate is pretty much equal to amnio when they adjust for a higher rate of miscarriage in the first trimester to begin with (i.e. the rates of loss for CVS seem to be artificially higher because there are more first trimester losses in general). My heart goes out to you. Your nuchal is really good here's hoping you get good news from the CVS!

nancy said...

Shawn, I already explained my decision. I understand you are trying to help, but playing the devil's advocate right now is simply making it worse on me. My decision isn't going to change, conversations such as this will just make me feel even worse. So please, no more questions or bringing up another viewpoint. I'd ~really~ appreciate it. Thanks! :)

Rachel said...

Thinking of you as you wait for the results. I also wanted to say that I admire the fact that you are taking this test as a way to be prepared for the future but not necessarily as a 'yes/no' test for keeping a child. Although I am completely pro-choice, I think it's great that you and your husband thought about what you might do with these results in advance and want to prepare if you are going to have a child with special needs.

I know it's scary that the risks went up with the blood test, but they are still very, very close to your age range risks, so try not to let the change get to you.

The Captain's Wife said...

Oh my goodness...You have a lot of us behind the scenes that will be as strong for you as we can. Hugs to you until you get through this and know for sure that your next punk rocker is indeed 100% fabulous!

Laura & Paul said...

Hang in there. I'll be praying everything is ok.

Meredith said...

Just want to say you are in my prayers. I

alison said...

I'm so sorry things are in the air right now. Hoping things turn out for the best. Keep breathing.

Geohde said...

Nancy,

I'm sorry you've got scary results. Hoping you get some piece of mind soon, because I agree the wait is stressful,

J

heavenlytini said...

i'm sorry to hear that. i'm praying your baby is healthy just like his or her's sisters!!! wishing you all the best!!!good luck with your cvs!!!i'll be praying for you!!!

Jaime said...

With each of my sister's four pregnancies all the testing came back with your percentages for downs syndrome or higher and they are all perfectly fine. Good luck and I know it will be a long wait until you can set your mind at ease.

Sharon said...

Thinking of you Nancy. Will keep everything crossed.

I am having my own amnio on 30 July - and I am just sick thinking about it.

Will be sending you positive vibes.

Sarah R said...

First of all, hugs to you. My sister-in-law is 39 years old and is due in September. She came back with a really high risk for Down's (based on her age). Everything looked great at her 24 week ultrasound. She had a specialist come in and do the u/s (that's why they waited a few weeks past the standard 20 weeks; they had to work around this specialist's schedule). Please try not to stress it too much and remember the chances are higher that everything will be okay. We're all here for you, Nancy!

Topcat said...

NANCY!!!!!!!!

I can't log in to check my gmail account, so don't know whether you've emailed me.

Sweetheart, I'm so fucking sorry about your results. I don't know about America .. but down here in Oz this happens to SO MANY WOMEN, and most of the time there is NOTHING WRONG. Actually it makes me cranky. Remember this happened to me? I had the amnio ... seriously scary. But, I didn't miscarry, and what a surprise, the baby was fine. If I had the choice again, I'd still do the same thing.
There's no way I could go through a pregnancy with that level of fear.

This is getting too long .... I'll email you from my proper email address.

Hope you are ok. Hang in there.

xoxoxxoxoxxx

bleu said...

I am so sorry you are going through this. All I can do is send lots of love hun.

Jenera said...

::Hugs:: I won't say anything else but that I'll be thinking of you.

Lilith Silvermane said...

*hugs* I really wish I had some brilliant words to say to you. So.. here is a cyber hug!

soapchick said...

Nancy - I'm really hoping those scary stats stay just stats. I will keep you and your little baby in my thoughts and prayers.

Cate said...

((((Nancy)))) I'm keeping you in my thoughts and prayers that is such a hard decision. I know you'll make the right one.

Katherine said...

I'll be thinking of you, Nancy. I know it's terrifying. And doesn't it always happen that we get such news on a freakin' FRIDAY, when there's absolutely nothing to do but wait and worry about it all weekend? I can't tell you to take it easy, because I know how I'd feel in the same situation, but stay strong. No matter what happens, knowledge is power. Take care.

Jen said...

(((((HUGS)))))
I'm not pregnant yet, but I can only imagine how scared/worried you are about your baby. Just know that you have a lot of people supporting you and wishing you the best of luck.

After all you have gone thru up to this point, I'm very sorry you have to be faced with this now. I will be thinking about you and your family over the next few weeks.

I'm sending you the best of thoughts for a perfectly healthy baby.

~~~Good Luck~~~

Not in the Water said...

Nancy -

My co worker went through the same thing. The stats were that way with her too and it was really just her age. I am sure all will be ok.

I will keep you in my thoughts...

Kimjj514 said...

Oh Nancy, please know that my thoughts and prayers are with you and your precious baby. If it's not one thing it's another. But I pray you are able to find some peace of mind until you get the test results back. ((((((hugs))))))

Mommyof2boys said...

Your in my thoughts and prayers !!

Wordgirl said...

Hi Nancy,

I'm just catching up with reading and read this as soon as it was posted...and then I wanted to come back and say the right thing -- and while I'm still at a loss to comfort you all I can say is that I think you're a strong, smart, beautiful woman and a wonderful mother -- and you will get through this difficult time.

My thoughts are with you Nancy,

Love,

Pam

theclam said...

Nancy, I wish I knew what to say to allay your fears, but I really don't (not having any experience at all in such things)...

What I will say is that I am thinking of you and your baby and I will be praying for all to be 100%.

HUGS to you!!!

Hollie said...

Nancy - I'm so sorry you are having this scare. Let's hope and pray that it's just a scare. Please stay strong for your baby. Remember these tests are just tests and not 100% accurate. And try to dismiss what dumbass people say. You don't need to have to deal with that.

~*JaYmE*~ said...

Nancy,
I will be thinking of you. I wish this could just a be an easy happy 9 months for you but you have had to go through so much crap already. I know you are scared but I have faith that everything will be fine w/your little baby. You only had a 40% chance of getting pregnant, then you had a 60% chance that it was ectopic and you overcame all of them. I know this will be no different. Miracles happen everyday and the fact that you are pregnant w/a health baby is a miracle. I know everything will be fine. Try and stay calm hun. I know easier said than done. ((((HUGS dear))))

Heather said...

Nancy,
Gosh. I hope it all works out for you. I am hoping and praying that for you it comes back as nothing. If there are any words of comfort for you, my sister has Downs Syndrome and she is the most sweetest girl you have ever met. It is like they are angels here on earth. Best to you. It will all be ok, no matter what the outcome.
Heather
(awaitingnangel WebMd)

jamie said...

omg nancy i just read your post and i am so sorry, i can't imagine what you are going through. you and your family are in my thoughts and even though the statistics are low it's still a slap in the face i'm sure. ~hugs~

BethH6703 said...

Oh Sweetie! {{{hugs}}}

I'll say a prayer that Tuesday's test goes well, and another that you can find some peace until you get the results back.

Much love darlin. I'll be thinking of you.

Nit said...

You and your baby will be in my prayers! I can just imagine how out of control you feel right now...hopefully the test will give you some piece of mind & good results.

take care :)

Our family is complete said...

Those tests are so scary and I can see why people opt out of getting them. When I was pregnant with Peyton I got a positive test for Trisomy 18. I thought my world was coming to an end. I met with the genetics counsler and they told me that if the baby did have it that he/she would not live. They kept pressurig me to get an amnio but I didn't. It was my choice. I then met with the specialist and had my u/s. I was scared to death, and was just numb. The doctor assured me that the baby did not have Trisomy 18, but I was not convinced. It took me till he was born to believe that he was 100% healthy and he was. Maybe I should have had the amnio to put my mind at ease, but when it came down to it we were not going to terminate the pregnancy anyway.

I can imagine how scared you are. I will keep you in my thoughts and prayers. I hope everything goes well.

((HUGS))
Amy

Nic said...

So sorry you're having yet another scare with this pg! Your NT measurement is fabulous - I think that has to count for a lot! I know SO many people who have had the screening tests and come back with elevated risks, all except one have gone on to have normal, healthy babies, and for that one her risk after the screening was 1/8. I hope so much that you end up on the right side of the odds this time too.

Denise said...

I'm sorry you're scared, but what's wrong with a baby w/Downs? It can't be that bad? I know several people with it and they are loving wonderful people. Also, I'm not sure where you got your 1 in 65 number for 35yo, but as a 35yo, I know its less than that. I believe at 35yo, it's 1 in 365, not 1 in 65.

Sara said...

I just got around to really reading this post and I am so sorry. I know you must be scared, and I know you are really wanting the results of the CVS. I will keep you in my thoughts as you travel through these next few days.
Hugs coming your way, and stay positive. That is all you can do - try to stay positive that this all will be okay.

nancy said...

Denise, nothing is "wrong" with a baby with downs, except it'd be a huge change. I'd have a child the rest of my life. You can't tell me a baby with normal chromosomes and a baby with downs are the "same".

As for your "I don't know where you got your numbers"... It was from the 3hour long meeting with my hospital's maternal fetal specialist. Let me quote the genetic counselor's letter. "The patient's age related risk for chromosome anomalies was given as 1 in 170 at livebirth and 1 in 65 in the first trimester".

Jen said...

I don't have any good words to make you not worry, so I am just sending lots of hugs your way!

JamieD said...

I am so sorry for this added stress. I am also sorry for the dipshits who found your blog (your next post).

You are in my thoughts . . .

Florrie said...

Hi Nancy, you probably won't remember me, but I remember you from the TTC boards on WebMD. I just found your blog recently. I wanted to tell you that the same thing happened to me when I was pregnant with my daughter Annabelle (she was born in March). My risk went from 1 in 460 based on my age to 1 in 90. I was terrified. It also seemed unfair after everything I'd gone through to get pregnant. Anyway I had the NT done too late to have a CVS, so I had to wait a month and have the amnio. That was the longest month of my life. I was so freaked out and worried, and I just wanted to know one way or the other. We wouldn't have terminated, we just wanted to know. Well, the amnio showed perfectly normal chromosomes. And if there is an upside, it's getting to find out the sex a littler earlier than expected. Hang in there, mama. You'll get through this.

Becca (WebMD TCCAS) said...

Oh Nancy - worrying SUCKS big time. I think that is the worst thing about pregnancy, especially in the early months - the constant, horrible worrying. There is nothing I can say you haven't already said to yourself a hundred times, so I am sending all the good vibes and hopes for a good outcome I can muster.

Also - not to be trite - but I'd play those odds in Vegas anytime.

p.s. Piss on the nasty trolls who get off on spewing unwelcome venom and nastiness.

chicklet said...

Checking in from Cambodia. I don't know what to say my friend but I'm thinking of you and hoping this all works out the way you want. The way we all want.

Artblog said...

I did a CVS at 11 weeks, you remember? For peace of mind this early on it was indispensable for me. The risks outweiged the chronic anxiety in my case. Whatever you do I'm praying the baby is ok. HUGS and xxxxxxx.

Jill said...

I'm not sure how I missed this. I know this is scary. Anything that I could say to try and comfort you probably really wouldn't at this stage of the game, so I will just keep you in my prayers.

Anonymous said...

Hi,

Just wanted to chime in and add that my OB also told me that the m/c rate was about equal for CVS vs. amnio.