Tuesday, October 25, 2005

Not good

The OB called after she got out of surgery. The risk that was flagged by the test is for Down's--1:63. The cutoff for "normal" is 1:190.

Perinatologist appointment Tuesday for a level-two ultrasound and, almost certainly, an amnio. With the AFP result being so far out of range, she said, an amnio would give me one of two things: peace of mind, or a definitive positive for a chromosomal abnormality and enough time to terminate safely, if that was our choice.

87 Comments:

Anonymous swannie said...

Lurker here, hoping (along with everyone else, I'm sure) that the other tests bring you better news.

2:08 PM  
Anonymous Namita said...

Another lurker hoping the amnio provides a definitive negative for you.

2:25 PM  
Anonymous Genie said...

I'm a lurker, too, but let me just say from experience, that the AFP is a giant pile of CRAP and scares a gazillion families for nothing, routinely. I don't recall how old you are (if you ever said), but the test is highly likely to have a negative result after "that certain age" even if all is totally fine. I'll be thinking, hoping and praying that all will be well...regardless of the amnio results. Be well.

2:35 PM  
Blogger MsPrufrock said...

::sigh:: As if you deserve any further problems. I hope the amnio results yield good news.

Best of luck, and I'll be thinking of you.

2:56 PM  
Blogger Miss W said...

Fucking hell. Really hoping that further testing gives you good news. Praying that all will be well.

3:03 PM  
Blogger JJ said...

Oh honey , thinking of you, and hoping all is well.

3:06 PM  
Anonymous deborah said...

If this kid has even HALF of your fighting spirit, all will be well. Wishing you as much peace as you can possibly muster through this difficult process. I'm here for you.

3:15 PM  
Anonymous Anonymous said...

I am sorry for this extra stress, and I hope that all turns out well on the future tests.

As an epidemiologist, I have to say that the way AFP is talked about drives me crazy, and I think promotes fear. The 1:190 result should be called AVERAGE, not normal... 1:63 does not mean abnormal, only that there is one chance in 63 that the fetus has Downs. This chance is still very, very low.

Juno

3:21 PM  
Blogger Cat, Galloping said...

Oh Bugs. If I were my mother, I would say "it's nothing till it's something." Does that help? No? Never helps me either.

Here's hoping it's just a scare... not that you don't deserve a scare-free pregnancy. I'm so sorry.

3:22 PM  
Blogger April said...

Bugs,

Trembling as I write this - but please know you're in my thoughts and prayers. I am so incredibly frightened for you.

Sending you all the love and prayers in the world

3:32 PM  
Blogger Anna H. said...

Bugs, we are here.

Sending you guys all our love...

xxoo

3:38 PM  
Blogger Karen said...

What Juno said - it might not feel like it when you've already been through so much, but the odds ARE in your favor. Hang in there, I hope you get reassuring news as soon as possible.

3:51 PM  
Anonymous Anonymous said...

my understanding is that 1:63 means a 1/63 chance that a baby has downs (with those AFP values). I will keep my hopes up that you are on the right side of these odds (the 61/62 or 98.4% side). It's unfair that nothing is ever easy.

bj

3:59 PM  
Anonymous Anonymous said...

Oh Bugs....holding my breath right along with you and sending you good thoughts and many prayers.

xo,
Emily

4:12 PM  
Blogger Lindy said...

Oh, Bugs. I'm just so sorry you're having to go through this after everything else you've survived. And I'm hoping with all the hope I can muster that you will be one of many stories about AFP scares. I have read that IVF increases the (already very high) risk of false positives, and it makes sense that having a pregnancy that started with triplets would also increase the risk.

I'll be thinking about you and Jeff. May the time pass as quickly as it can.

Lindy

4:21 PM  
Anonymous Mandy said...

Here, waiting with you and praying for good news.

4:29 PM  
Blogger Kristin said...

Oh honey...I am praying for you. I have to go in for a level II with the peri also.

4:33 PM  
Anonymous Kate said...

Another lurker de-lurking to say that I'll be thinking of you and your family. I, too, hope that this is just a scare. I don't want to say the wrong thing, but hang in there.

4:42 PM  
Blogger Cass said...

Oh, sweetie. I am so sorry you have yet another twist on the roller coaster. Know that we are holding all three of you in our thoughts and sending loads of hugs.

4:52 PM  
Blogger Dramalish said...

AFP's are scary. My thoughts and prayers are with you and your family for a safe amnio and quick, reassuring results.

-D.

4:55 PM  
Blogger Julie said...

Loving, waiting, and hoping.

4:58 PM  
Anonymous Ollie said...

God, Bug, I can't imagine the hell you are going through right now. Please know I am out here, hoping, wishing & praying for all things good. And sending you a lot of love, honey.

5:08 PM  
Anonymous Z said...

i'm so sorry you're going through this. you're in my thoughts and prayers!

5:12 PM  
Blogger Cricket said...

Bugs, I'm sorry. I know you're stressed. I've been there.

I used to run these tests. Remember, they are a screen. They pick out folks more than they need. I'm surprised they didn't offer you a retest; that was our old protocol.

There are lots of rather benign reasons for a low or high AFP. I used to run them back when they were quite pioneering and not part of a triple screen, before they knew the folic acid-NTD connection. Even then, they knew there were lots of reasons for varying numbers. The low AFP-Down connection was new and the researchers I worked with it didn't trust it. We'd had high AFPs with Down; it was all over the board.

For these many reasons, when my son's AFP ironically came back high (and the doctor freaked), I declined on anything further, despite my AMA - and the doctor freaked further, so I changed to a midwife. (Just stating my decisions based on my work experiences, not passing judgment on your course.) My son was fine, but he did have an "aged placenta" (it was good he came early b/c it looked way beyond its 37 weeks age, as bad as an IV drug users, which I'm not, of course, or else I would have 5 more kids by now) and I've wondered if the wonky placenta spilled extra AFP all along. (For clarity, they don't really know what causes aged placentas - I've seem that it might be immunological or high blood pressure, but the latter was fine for me.)

In summation, there are reasons for oddball numbers, but few of them have bad outcomes, as I attempt to be factual here and not dismissive.

6:08 PM  
Blogger Zarqa said...

Good God. Just so you know, the quad screen is notorious for giving false positives. I don't know why but I say this because a woman in my yoga class when I was pregnant got back a bad quad screen result, she had another one and it was completely normal. She said that happens all the time with quad screens. Wishing you the best whatever happens.

8:08 PM  
Anonymous Mary Scarlet said...

Hi Bug, I'M reassured reading everyone else's comments, hope you are too and hoping for a good result tomorrow. I'll be thinking of you.

9:05 PM  
Anonymous Anonymous said...

thinking of you both my dear!
bhm

9:50 PM  
Anonymous 2hatchlings said...

My thoughts are with you! My husband is an ObGyn resident and explained to me some of the details of the triple screen. Do you know which portion is abnormal? AFP, HCG, or Estriol? There's a high false positive rate with the aggregate value. Only 6% of all screened positive samples are associated with an affected fetus. I'm crossing my fingers with the amnio!

10:17 PM  
Anonymous J said...

UGH. I am so sorry -- all that keeps running through my head is "NOT FUCKING FAIR!!!" Why in G-d's name should you have to have such a tough, worrisome time when you already went through hell to get here?? Not fair. Thinking of you, and praying for the typical false positive.

11:22 PM  
Blogger twirl said...

I don't know anything about this, but I'm thinking of you, and hoping for the best.

12:50 AM  
Anonymous Anonymous said...

Oh (((Bugs))) - scary, scary times. So annoyed that you're not having the breeze through pg you deserve. Remember my Down's result was 1:50 and all was fine - and I've had several friends have the same thing, all to be fine. And as others have said the odds are still stacked in your favour. But I know you won't be able to breathe again until after the amnio/level II u/s. Thinking of you sweety.

Maz
xxx

1:55 AM  
Blogger MC said...

Thinking of you and hoping that things will work out. I'm sorry that you are going through this extra stress.

3:35 AM  
Anonymous queenvanna said...

Coming out of the "lurkiness" to wish you well. I know nothing we say can stop your worrying, just know we're rooting for you!

4:37 AM  
Blogger Em said...

Not much personal experience to share nut I hope it goes in your favour.

4:51 AM  
Blogger Julie said...

Bugs - I'm sending you many prayers and positive thoughts that your baby is ok.

5:41 AM  
Blogger Dream Mommy said...

I'm sorry you're having to go through this extra stress. I'll be praying for good results.

5:52 AM  
Anonymous Caroline said...

Sending you tons of positive thoughts...I hope from the bottom of my heart that everything turns out ok.

5:54 AM  
Blogger Jenn said...

DO NOT PANIC! THERE IS A 95% FALSE POSTIVE RATE FOR THE AFP IN PREGNANCIES CONCEIVED VIA ASSISTED REPRODUCTION. And on top of that, your HCG levels due to the triplets only adds to this ridiculousness this test brings. When we found out about this high false positive rate, we opted NOT to have the AFP. (Also, I have 7 girlfriends who have had babies in the past 18 months. 6 of them had a flagged AFPs that turned out to be false positives.) Instead of the AFP, we had the NT scan with bloodwork. It apparently has 92% accuracy. It is not widely used bacause insurance won't cover it--and it is expensive. It essentially is a genetic counseling session, with supportive bloodwork (can't remember what they test for) and the high level u/s. All the results from the 3 different components are mushed together to give you the "odds". Given that it is MUCH more accurate than the AFP, and MUCH less invasive than an amnio, I still don't understand why insurance won't pay for it.
IT BOGGLES MY MIND THAT INSURANCE WILL PAY FOR A TEST WITH SUCH A HIGH FALSE POSITIVE RATE THAT LEADS TO AN INVASIVE PROCEDURE (AMNIO) AND NOT FOR A PROCEDURE THAT IS LESS INVASIVE WITH A HIGHER ACCURACY RATE!!!!!!

6:14 AM  
Anonymous Tine said...

Everyone else has said it better already, but I want to add my voice to all those saying: The odds are in your favor. WAY in your favor. I know it's still hard not to worry, but I hope you can take at least some comfort in knowing that this is more likely a scare than a real obstacle.

6:23 AM  
Anonymous Molly said...

Thinking of you, and hoping that what Jenn said was right.

6:28 AM  
Blogger Emma said...

Another lurker here, I really hope everything goes well. You're very brave to go for an amnio.

I hope everything turns out ok.

xx

6:28 AM  
Blogger Suz said...

To echo the other folks -- the AFP is a crock. I just went through the same thing and was terrified for weeks - all for naught. Take care of yourself.

6:30 AM  
Blogger shelley said...

De-lurking to say my thoughts are with you and your family.

6:42 AM  
Anonymous laura said...

Oh no. I'm hoping this is just over-cautiousness and the results will be negative. It's never easy, is it? Thinking of you.

7:23 AM  
Anonymous Alexa said...

Oh, oh, dear. Oh, Bugs, I am so sorry, and thinking of you. There seem to be lots of encouraging comments, so I hope this turns out to be a false alarm. I hate that you have to go through this, after everything.

7:40 AM  
Blogger PJ said...

Bugs, I'm really hoping, like everyone else, that this is a false alarm and that the amnio brings good news.

I'm thinking of you.

8:02 AM  
Blogger Lala said...

I'm just gonna say NO and sit here with my arms crossed until I hear differently.

8:04 AM  
Anonymous Leggy said...

Ugh- I'm sorry you have to face this. I hope the news is good.

8:04 AM  
Anonymous Leggy said...

Sorry- I was writing quickly. I meant that I hope when you get more information that it comes back telling you the baby is fine. I'm sorry that you have to face this stress- how agonizing, particularly after all you've been through.

8:09 AM  
Anonymous leslie said...

misery to go through more worry. Remember what everyone has said about the notorious inaccuracy of the AFP and try not to panic. yeah, right.

I think all the testing and information made available to us only increases people's stress level because it's almost never presented with the necessary caveats about accuracy. firmly hoping all will be well -as is most likely!

8:16 AM  
Blogger Claudia said...

From all the other comments it sounds like there's more to hope for than worry about. I certainly hope that's the case - keep us posted, I'll be thinking positive thoughts.

8:28 AM  
Anonymous Day said...

Oh Bugs, so very sorry you have to endure this. You and the babe will be totally fine, but unfortunately you'll need to go through the stupid amnio to actually be able to believe it. I know several couples who suffered through this and they are now all enjoying their wonderfully normal healthy babes. You will too.

9:30 AM  
Blogger Amanda said...

Delurking... I had an AFP test with my first child. The results came back high which could mean spinabifida (sp?) or other neurological defects. I decided not to have the amnio, because I wanted him regardless. The doctors tried very hard to talk me into an abortion, at 6 months no less. I, again, declined. My son was born with no defects, he is now a healthy and happy 9 year old. I did not have the AFP with my other pregnancy. If asked, I always suggest that other women not take it either. Hope all goes well, prayers for your family.

9:41 AM  
Blogger Mrs. T said...

So sorry to hear this! I hope the amnio brings you good results. No one should have to go through this. Thinking of you!

9:47 AM  
Anonymous Tine said...

Just want to mention (since no one else has, and in the extremely unlikely case that you don't already know this) that amnio carries a small risk of miscarriage.

You haven't mentioned whether you've decided to do the amnio or whether amnio results would affect your continuance of the pregnancy. Just want to point out that the m/c risk is something to consider if you plan to continue the PG regardless of test results.

10:12 AM  
Blogger seattlegal said...

Yet another lurker here - I hope everything turns out for the best!

10:18 AM  
Anonymous wessel said...

I only have anecdotal info, but Cricket's information is more factual and right on. I had an abnormal AFP with my son at around 15 to 16 weeks. Of course, I freaked. They repeated the test and it came back normal. There are numerous reasons why an AFP can be abnormal, all unrelated to the baby.

Honestly, I do not know why they still do this test. I've never even met anyone whose AFP turned out to be accurate.

Nonetheless, I know that you are scared, and that you can't just assume that you are going to be in the huge majority of people for whom the AFP is wrong, no matter what any of us say. We will be right here waiting with you as you go through the next steps. Thinking of you and sending a prayer up for you too.

10:35 AM  
Blogger KC said...

Down's Syndrome ain't what it used to be -- it's better. Assuming you get accurate results that make it very certain your kid has that chromosome anomaly, you owe it to yourself to read the many encouraging, happy stories out there about these kids growing up and doing extremely well. The Wall Street Journal had a story very recently about one couple with Down's who got married. There are others if you look.

11:15 AM  
Blogger chris said...

Thinking of you. I hope this time passes quickly and ends up being another one of those damn AFP horror stories.

11:44 AM  
Anonymous Anonymous said...

Just thinking of you, loving you no matter what.

Karen/ Naked ovary

12:52 PM  
Anonymous wessel said...

KC, I don't think that now is the appropriate time to sing the praises of chromosomally abnormal people, and it is never the right time to start pushing your religious beliefs, okay?

1:18 PM  
Blogger erinberry said...

I'm so sorry you're going through this scary time. I hope it all turns out to have been nothing.

1:37 PM  
Anonymous thisgirl said...

My sister-in-law was just put through this same terror, and all for nothing....her baby was fine.

I'm so sorry your having to deal with this. I will send good vibes your way, hoping all is well.

2:34 PM  
Anonymous Jenn said...

I'm so sorry Bugs. I'm thinking of you.

2:51 PM  
Blogger The Lioness said...

Oh Bugs, such a horrible fright! I am also much more reassured now that I have read all the comments and I too don't understand why insurances will push it insetad of NT and bloodwork, considering there's nor risk involved in the procedures and a much higher accuracy.

I wish you strength for the next few weeks and hope we can all blog-party soon over the happy results. Much love.

3:39 PM  
Anonymous Jessica said...

Hi,
Also delurking to say, we did the same test. It came back like yours. Our NT was bad too.
The amnio reveiled a healthy baby girl.
There are TONS of false positive AFPs.
Hang in there.
Oh and ask them to FISH the amnio results. It means you will get the results within a few days rather than having to wait two weeks.
Crossing my fingers for you and your tenatious little one.
Jessica

4:00 PM  
Blogger Millie said...

Just wanted to let you know I'm thinking of you and hoping you get good news soon. So sorry you're having to go through this at all.

5:35 PM  
Blogger persephone said...

oh no. no no no. this is too much.

I'm feeling a bit calmer after reading all these comments, I hope they do the same for you...

6:21 PM  
Anonymous Anonymous said...

Bugs,
Here is a big ole gay cyber hug, and a shoulder if you need one...
--Soper

6:40 PM  
Blogger Aliza said...

I'm crawling out of my blog cave to see how others are faring. Sending positive vibes your way. If I get past the next few weeks, I know I can't even breathe a sigh of relief because then there are The Tests. Well, we signed up for this stuff, didn't we? But I think we also deserve all good news, all the time. Take care!

10:08 PM  
Anonymous Chinkis said...

Bugs.. Am sure the amnio would come out a sure negative and you and we all will be relieved. Sending your way all the prayers and wishes you need and eagerly waiting for the good news.

10:24 PM  
Blogger Ova Girl said...

Bugs, am so sorry, that sounds extremely scary. I hope that the tests give you peace of mind, and I'm sure that a lot of the great comments above have helped.

2:04 AM  
Anonymous Adrienne said...

I'm sorry, I went through the same thing when I was pg and know how awful the worrying and waiting is. I hope the u/s is reassuring and that if you decide on an amnio (we did) that it reveals a perfectly normal baby in there.

big hugs, will be thinking of you.

Adrienne

7:09 AM  
Blogger Linda said...

I'm so sorry. I'd like to add another case of false positives with my nephew. I'm hoping for good news for you as well.

Wessel, I agree that KC was out of line, but I didn't sense any religious beliefs in there.

8:02 AM  
Anonymous Beagle said...

Joining all here to hope that you get some worry ending good news very soon

12:03 PM  
Anonymous wessel said...

Linda, you're right. Perhaps I was just reading between the lines too much.

12:16 PM  
Anonymous A. said...

If you can, schedule an u/s at one of the places where they ONLY do ultrasounds, where they have the 4D pics and everything. We did one at 12.5 weeks, and the doc was able to look for all the DS markers -- nasal bridge, distance between eyes, etc. etc. Based on that U/S, I declined to do an AFP, and the u/s doc and his main nurse both said it was an excellent decision. SUCH a high false positive rate, and it's only giving you a tiny piece of info, etc. Get in for one of those ultrasounds, pay cash if you can for a faster appt., SUCH piece of mind. As a bonus, at 12.5 weeks, we were able to definitively see that we were having a boy.

12:57 PM  
Blogger Sandy said...

I have no wisdom or experience that could help you right now. I do have lots of prayers going your way to support you through whatever decisions need to be made.

2:25 PM  
Anonymous mar said...

Just another lurker to say that I was also one of those people with a bad AFP screen. Hadn't planned on doing an amnio, but after that my doctor didn't give me a choice. Amnio came back perfectly fine - my "baby" is now 5 and normal as can be.

AFP tests can be so unreliable - my OB now only does the AFP for those people who are not planning on having an amnio - she says no sense scaring people unnecessarily.

The hardest part is the waiting ... may it go quickly for you both.

7:26 PM  
Anonymous pixi said...

I'm so sorry that you're having to face this worry. I sincerely hope everything turns out OK.

8:19 PM  
Anonymous Leigh said...

Jumping in to say that I had this happen with my last baby...only it was a 1 in 36 chance of Down Syndrome. We had the Level 2 ultrasound and there were no markers so we refused the amnio (I had lost my baby before that at 17 weeks and I just couldn't deal with any extra risks.) Anyway...baby was perfectly fine. If we ever have another baby I'm refusing the AFP test.

5:32 AM  
Blogger Carrie said...

When I was pregnant with my daughter after three years of trying, we got bad test results that turned out to be true (she doesn't have Down's, but has rare congenital condition, and we found out late in the pregnancy). I truly, truly hope that your results are wrong, and that your baby isn't affected. It's sounds like there is a very good chance that they are wrong. But I remember, even through all the reassurances, thinking, "What if the test results are right? What if there *is* something wrong?" I could have used someone telling me that things would be ok either way. I can't speak for anyone but me, but I can tell you that while life with my child isn't what I had planned, it isn't worse than planned. I can't imagine loving her any more if she could walk, and I wouldn't trade her for anyone else's kid. She is amazing, and I can't believe my luck in getting her. My fear was that all the things I wanted for my child wouldn't be possible, that we couldn't have a normal family, but it didn't take long to figure out that the most important thing--that she is happy with her life--is there.
Maybe this isn't what you wanted to hear, but it is what I wanted to hear when I was in your place, and I hope it brings you some comfort.

7:29 AM  
Anonymous Jody said...

No woman carrying triplets by the time of the AFP takes the test, because three placentas render the test meaningless. Although I hate even conjuring your lost babies, I wouldn't be surprised if their presence in the past altered the test results in the present.

I sincerely hope that all is well. I also pray that you have every support and diversion you need to get through the next few weeks.

8:12 AM  
Anonymous Anonymous said...

Have to happily agree with KC. I know it would be hard, but really, it could be SO much worse! More then likely your results will come back and your child will be perfectly fine, but if, worst case scenario, your child DOES indeed have Downs.... well that is not such an aweful thing! People with Downs continue to be successful, productive members of society. Having spent many years working with several persons with Downs, my opinion on this disability has really changed. Yes, they have limitations, yes, it is challenging for Mom and Dad, but YOU can do it! You're tough! I hope all works out well in the end, no matter what your result.
Sabrina

10:51 AM  
Anonymous Sabrina said...

WESSEL (or Linda).. I welcome an e-mail from you.. I don't understand how what KC said could be considered inappropriate, considering the subject matter....

10:58 AM  
Anonymous Sabrina said...

Sorry... hiddentreasuresllc@hotmail.com

10:59 AM  
Blogger imtheretoo said...

I'm going through the same situation as we speak. I'm waiting on amnio results. If it helps, this is my third child and a third positive. So far, they've all been normal and healthy. This time I opted for amnio because I was told my baby showed a second sign of Down's...which they called "tricuspid valve regurgitation". I'm so scared. I'm hanging on to hopes of past false positives and like you, I will be welcoming my healthy baby soon. I'm praying for you.

9:21 PM  

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