And there I was getting all caught up in the likely non-existent lead poisoning debacle when I had so much more to be worried about: the nuchal transulcency test results. According to my doc, at my age (the practically teen aged 35), the risk of Downs is slightly elevated, but still low, considering it is at less than one percent (my google research shows 1/400 or .0025). The results of the nuchal test elevated that to slightly higher but still less than one percent (1/161 or .006). I don't want to have an amnio - I'm fearful of the miscarriage risk (although small). And I also know that at less than 1%, it's still likely (one hopes, one hopes) that things are fine. However, I'm worried that you will read this and think, "Oh, no, that is bad. I've never heard of such a high risk!" I'm worried that maybe I should have an amnio - even though I've been against it since day one. I've been reading a few other blogs who had nuchal scares - and their statics were somewhere in the 1/250 range. Shudder.
The doc seemed mellow about it, however. He indicated that some people probably would have an amnio with my results - but when pressed, said that he himself, if it were him, probably would not (the mental picture of him pregnant, was amusing). He also said I should keep in mind that he's just not the overly anxious type and he's had patients with a 1/5 chance of Downs who, in the end, did not have a Downs baby.
One minute I'm fine and sure all is well, and the next minute, well, I'm crying while trying to puncture myself with a needle filled with heparin.
Ah, onwards and upwards, dear ones. I suppose only time will tell.
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19 comments:
Hey, even a 1/5 chance means that four of those people will not have a baby with Downs. I think your odds still sound great.
Onwards and upwards. I'm sorry you're anxious--I know everything about this process is nerve-wracking. Hope your mellow doctor inspires confidence and calm. Your baby will be wonderful.
I'm sorry about the extra stress. That suks. But I like what Jen said and agree...your chances are VERY GOOD that things will be fine.
Try not to think of it. Yeah, I know...but try.
My friend went through all this with the results of her AFP. She declined the amnio after a detailed u/s made Downs seem unlikely. And the baby did not have Downs. I wish you luck!
When I had the nuchal, I was also (due to the miscarriage risk) very anti-amnio. My assvice, because this is what I had decided to do, was to wait until 20 weeks when then can do the detailed anatomy scan and then re-evaluate. They can see a lot at the anatomy scan and by that point the fetus is big enought to sometimes "rule out" a Downs risk.
The odds are still very good, though. I know it is SO HARD to focus on the positive, but you actually did get good news. In any other area of live, those are pretty fantastic odds.
i know it's scary, but the odds are so freakin low. really.
do the anoatomy scan and reevalute.
sorry you're stressed. i don't think you should be-but that doesn't help so much, huh?
I do agree with what everyone has said--the risk is still so low and it is probably wise to wait for the detailed scan... But I know how you feel--you've been on the wrong side of statistics before, and it is hard to just be calm about it. You have probably asked yourself this question already, but let me pose it anyway: if you did the amnio and it showed Downs, what what you do? Perhaps your answer would tell you whether or not to pursue amnio.
Kate:
That is a good question - after four miscarriages and five pregnancies, I don't think I could terminate (although if other people would, I support their decision). I spoke to my doctor about that and he said, "Well, there's your answer, don't do the amnio." What I didn't anticipate is the constant worry - can I really wait that long, until the birth, to know? I'm not sure.
Time will indeed tell. But it sounds pretty low to me. Deep breath. And another. And then the anatomy scan will be here.
I was going to write exactly what Kate said. The real question is what would you do with the information if you knew the fetus had Downs. Someone very close to me had a child with Downs (she did not know her child had DS in utero) and she said in hindsight she is glad she did not find out because she wouldn't have terminated the pregnancy anyway. Hopefully the anatomy scan will send any fears away. Please don't cry. It will be okay.
So sorry you are going through this scare. I know how horrible it is. As others have said, what you would do with the information provided by the amnio is key. For what it's worth, your odds are still fabulous. We were given a 1 in 5 shot that one of our twins had DS or other chromosomal problems. Went through with the CVS which revealed things are fine. Not knowing, regardless of how we would proceed was just something I knew I wouldn't be able to tolerate. Keeping my fingers crossed for you but I don't think you need it. Chances ar things are great!
I came over from lost and found.
This is so hard. With my twins at age 37, our risk was 1/8 and 1/62. We decided to do the amnio, just so we would be prepared when the babies came. (Turns out most of those numbers were due to my age and twinness -- amnio showed that they were chromosomally *normal*).
I understand your fears. I haven't read a lot of your blog, so I don't know how you feel about living with a child with special needs. I think your biggest factor should be, what would you do if the amnio showed a trisomy.
My amnio sucked, and I wound up losing my twins to premature rupture of membranes a month later, though my doctor assures me one had nothing to do with the other.
I don't mean to scare you, but I think probably the most important thing to consider is how you feel about living with the consequences, which ever way they went.
Can you live with a down's baby?
Can you go the rest of the pregnancy without knowing?
Can you live with the risk of the amnio?
Certainly there are other reasons for pregnancy loss and termination. Perhaps one way to look at it is, if you were to look back on this in a year or two or five, what would you wish you had done?
I wish you good luck with your decisions and your pregnancy.
at my 20 week ultrasound 2 soft markers for down's syndrome were found. while there are no specific stats for this, b/c my age, quad screen results, and nuchal fold results all still factored in- i was at a much increased risk of having a child with down's. i've been in your shoes. i also did not want an amnio as i felt that the results would not affect my decision to continue or not. still, IT SUCKED. i didn't want to have a baby with down's. nobody WANTS that. but ya know, in the end i realized that downs is one of the few conditions that can be diagnosed in utero, so people try to link EVERY finding to down's somehow. if your doc says he isnt worried, i would take his word on it. we were refered to a genetic counselor who was a VERY knowledgeable and experienced person and made me REALLY believe him when he said 'there is nothing to worry about here'. have you seen a genetic counselor? do you think one more doc adding in a 'your fine' would reassure you? its worth the referral if you think you are going to worry about it the rest of the pregnancy b/c that would suck.
Came over here from Lost & Found. I'm sitting here, 17 hours away from finding out if my baby has kidneys (I terminated my last pregnancy at 20 weeks because the baby didn't have kidneys--a lethal condition). Because of my experiences, I am obviously very pro-ultrasound for the problems it can detect.
However, I also believe strongly in going with your gut. Despite our terrible previous experience, neither my husband nor I want to have the quad screen again. It's just something we feel. I think your gut is more important than any advice anyone can give you. If your gut is telling you "NO AMNIO!" then don't do it. Just wait it out.
It all depends on yur personal perception of what is too much risk and how you feel about a potential Down's pregnancy.
Some women end up having amnios for very very low risk results (I saw a patient with a nearly 1:10,000 risk have one) because no level of risk is acceptable, and for others *no* risk result (no matter how elevated) is worth the risk of m/c from an amniocentecis. Most women are somewhere in the middle.
The risk of m/c from amnio above the background risk of m/c at this gestation is about 0.5% (which I'm sure you know), which is very close to the 0.6% (1/161 as a percentage) risk of downs you have. So it's even-stevens, really.
Odds are everything is fine, but it's a tough thing to be faced with,
J
I'm here from Lost and Found, too. What was your nuchal measurement? And did you have the associated blood work? That's really key to a fuller answer.
Ultimately, as someone else said, what you do next depends on what you WOULD do next. If I were you, I would ask your doctor for a referral to a genetic counselor, if that isn't part of your practice. They can sit down with you and go through all the risks and all your options and help you focus on what is important to you. Good luck.
what which box said. What tests are giving you that risk? Did they look at the heart and the nasal bone?
Re the amnio, my understanding (from aurelia, who you should contact) is that the risks of amnio are way overstated, so you should bear that in mind.
Hoping this is no big deal and you get the reassurance you need soon.
I deliberated about this prior to the screening (and decided not to go ahead with screening at all). Here's my post on it where I try and explain why I decided against it.
(Initial thoughts are in a post here.)
You may decide on a different course of action than us in the long run, but just hoping to give you a few angles to think about it from. I think if you decide to live with a 1:161 risk that's more than ok!
Bea
P.S. I like ste's answer.
Also, I've heard a high risk OB say the opposite to what Thalia said - he thinks the risks of miscarriage are often *under*stated. It's also quite variable between practitioners, so your m/c risk depends a lot on who you choose to do the amnio procedure.
Bea
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