20 February 2008

not a moment's peace

I had a terrible feeling in my gut. today was the dreaded NT scan/genetic counselor meeting. I had my first trimester risk assessment b/w last week so all the key information was available to us today. first of all, nobody told me I needed a full bladder for the u/s. nice. the genetic counselor made a bladder joke at the end of our meeting. "what are you talking about?"

the u/s was very sweet. b took the day off (SHOCKING) and he was able to see little one for the first time (now looking rather human) in action. the tiny hands and fingers took my breath away. we even saw a close-up of the itty bitty foot prints. little one cooperated for the most part -- even with an empty bladder. the NT measurement was 2.0 which is supposedly "in the normal range." I'm still measuring 2 days behind which I realize can make a difference in this measurement. but if someone in a white lab coat says the word "normal," I gotta go with it.

the little room overlooking a very congested interstate 95 is where "normal" didn't apply any longer. the genetics counselor input all my stats and we waited for the computer to give us a possible glimpse into our future. Positive. INCREASED RISK Down Syndrome 1:170.
not good news. the counselor, frowning, explained that they like to see at LEAST 1:200. my heart sank. I was speechless. my age, hCG (92.30IU/mL), PAPP-A (1.38 ng/mL) and NT (2.0mm) all combined gave us the grim results. on the flip side, I also tested negative. DECREASED Risk for Trisomy 18 1:5300.

what does this all mean? amniocentesis at week 15. fuck. and more b/w. I'm tired dammit and not equipped on any level for shitty news. 2007 was entirely about IF. excruciating HSG, bilateral tubal surgery, DOR dx, MF dx, 4 rounds of IVF (the last 2 had the added bonus of 4 hour daily commutes to cornell.) the glorious BFP was short lived because of first trimester uncertainty -- low and slow rising betas, high risk of m/c and subchorionic bleed. I am just days away, DAYS AWAY, from the second trimester -- out of the "danger zone" -- and now this. there were a lot of tears today. again. I just want a moment where I can feel good and positive for a change. I need to feel at peace and begin to enjoy what I have worked so fucking hard for. the same thing that has totally consumed my life for so long now.

if anyone has ANY insight into these numbers I welcome your thoughts.


mrsgingergrl said...

I'm sorry and know what a stress it is. We had a 1 in 19 chance after the NT Scan one of our babies had Downs, and had the CVS test done which came back normal. I hate to use our baby as an example because he did end up being born with some serious medical problems, but not any kind of chromosonal disorder.

If you look around on the net you'll see MANY MANY stories of people with much higher risk numbers than you have and everythng turning out fine. The NT is basically a screening tool... it filters out a huge number of babies for further testing, 99% of which end up being absolutely fine.

AwkwardMoments said...

I ahve no insight - just prayers and good thoughts for you. I DO know what you mean about requiring peace about "all of this"

Rachel Inbar said...

My AFP came back with 1:150, which sounded incredibly high. I had to reframe it to understand that that meant 149 out of 150 babies would be healthy. Fortunately, ours is one of them.

Having read about early amnios, I'm not sure I would go ahead with it. They have higher risk than those done at beyond 16 weeks and although knowing ASAP is nice, the likelihood is still that everything is fine. Additionally, an early anatomy scan can be done to look for soft markers. With it being non-invasive AND based on objective & not statistical data, it may give you some peace of mind.

Wishing you only the best!

Kathy V said...

I do not have words about the numbers but I offer support. hugs to you as you go through this.

Aunt Becky said...

Oh darlin'. Oh you poor thing. You HAVEN'T gotten a moment's peace, have you?

I've never had any of those tests with either of my kids (I operate under the ignorance is bliss mentality when it comes to this stuff), so I don't have much to say.

I wish you peace and light.


Jo said...

Too much stress...
My son was at 2.1 and I was 40.. I passed on the amio as the risk was too great in my opinion. There were also no "soft markers" or anything else that they could show me.
My son is a healthy, active 2.5 year old now in spite of all the "scares"
It's so hard to not read into numbers and statistics. It IS a screening tool like Mrsgingergrl said...but do what you feel YOU need to do in YOUR heart.

Anonymous said...

Rachel's right, couldn't they do an early Level 2 u/s before they do amnio? At least they'd be able to look at the chambers of the heart (my OB told me that DS babies frequently have heart issues which show up on the L2 u/s) and make sure they're formed properly. And, that would give the baby more time to develop and get stronger before the amnio, too.

oh, I wish I had words of comfort for you. All I can do though is keep my fingers crossed.

ms. c said...

I wish I could make this go away. We work so hard for our pregnancies, results like this are like another punch in the gut.
I had a similar situation-an elevated risk of downs. I got the result only at 18 weeks after we had done integrated screening (which looks at the results of tests at 12w and at 16w.) We did an amnio at 19w because we wanted to know "for sure" so that we could do the necessary research if need be.
You can read about my reactions on my blog (in the month of October), and perhaps there is something n the comments that you will find helpful. Please leave me a note on my blog (my email doesn't work), if you want to talk further.
I wish you and your husband lots of peace at this time.

Heidi said...

I have no insight for you, but wanted you to know I'm out here thinking about you, and cheering for you!

Love, hugs and hope

Rebecca said...

I really hope you can catch a break soon...hopefully the amnio at week 15 will give you some much needed insight (even though you didn't want it). Try to stay positive for the little one! You have so many good suggestions on your comments too...thank God for a community, huh?

Aurelia said...

Hi, I just came here from the lost and found. And hopefully with some help? I've been through a medical termination for a T18 pregnancy, and have had the nuchal and various blood tests just like you have.

The NT isn't bad at all, really. Your baby could be perfectly fine, and your blood tests could just mean an elevated risk of placental problems with a chromosomally healthy baby. There are things they can do to monitor your placenta, like check the blood flow through it and there are things they can do like blood tests at 15-16 weeks to check your placental quality.

(Most docs agree that an amnio is proof of healthy chromosomes, the 15 week quad screen is still useful for checking on placentas.) To help your placenta along, you could take baby aspirin, or start heparin now, even if it might be too late by some Docs standards--who cares? Do whatever you have to do to get a healthy baby, right? If it's truly bad, aspirin won't fix it, but if it's marginal, it can be just the booster you need.

Get the amnio to reassure yourself, but don't worry a lot about it, your numbers are not so terrible.

Email me if you have any questions.

Joy said...

Oh babe.. :(
I don't know much about these results as I haven't had my NT scan yet so haven't looked into them just yet.

I know I hear a lot of women talking about elevated risks & then everything is fine. I truly hope you're one of them.

Big hugs to you,


Helen said...

I too know where you are - I have IVF twins, and the NT scan came back fine on one, but at high risk for the other. We had a CVS done on our one risk baby, and it came back fine.

This is really hard to go through, and a peace of mind (for me) was worth it. Can they do a quad panel and see the numbers, too?

Amnios and CVS have good, safe rates if you have a doctor who is no stranger to them. Many of us have had amnios/CVS and we're here to help, if you want to vent.

Shinejil said...

I am so sorry that circumstances are conspiring to steal your peace! It sounds like other, more experienced folks have given you some great pointers. I hope everything works out well.

Anonymous said...

i have a friend who got a 1:32 on her test - early 30's. she got an amnio at 16 weeks, and the baby is perfectly fine and she's due in a few weeks. i know it may not help, but you have about a 99.5% chance that the baby will be perfectly fine.

is there any way that you can do CVS now? i have another friend who just opted to have the CVS because she is 35. she said it wasnt bad at all, and they got assurance early on that the baby was fine.

good luck with whatever you decide.

Anonymous said...

I don't have any advice, but I'm sure I'll be in the same boat as you when I get to that point. It's always something, huh? Hang in there!! I try not to put too much stock in the statistics or I would drive myself crazy!

Thalia said...

lots of good advice here. What aurelia says is important. Antigone did a lot of research on what causes plancental malfunction and I remember that the Papp-a result is one indicator, as Aurelia says, so do bring that up with your doc. (antigone is at antigone loss). The NT result is well within normal range. Did they test for downs soft markers? Heart structure? Nasal bone? Without those I'm not sure how good an indicator you've got.

Hang in there.

Portia P said...

There's not a lot of practical stuff I can offer, sweetie, but I just wanted to offer a virtual hug.

I'm sorry you're still being tried and I hope the advice above is helpful and that all this turns out to be nothing.

Thinking of you x