Update: As luck would have it, the woman I met with yesterday went through this same shit. They called her and told her her baby had Down’s. She freaked out, had amnio, all is fine. I googled the crap out of this last night; apparently, there is an extremely high rate of false positives on the 2nd blood test that you do with this Early Trimester Screening. A lot of women opt to not do the 2nd blood test because there are so many false positives. Oh, and if you’ve conceived with donor egg, there is a very good chance they have f’ed up your age with the donor’s age. Next step will most likely be a high-level u/s. If that is okay, I think I will most likely refuse amnio. If not, I’ll probably do amnio.
Why the FUCK do they make us go through this? 1-2 out of 50 women will actually have a problem; most will not. That says to me you’ve got an f’ed up test that needs some serious overall. As if pregnant women don’t go through enough, and women who have had to go through ART get a double-dose. Jesus!
Because the worry and fear never seems to really be over when you’re pregnant… I have another round of The Scary to deal with. This time, of the AFP, not the bleeding kind.
I think it’s elevated AFP. I got the news an hour ago in a form letter from the state. No details in the letter, of course. No word from my OB. I’m assuming (praying!!!) that she is not overly concerned. Not like her to let me get news like that in a form letter.
I don’t know for sure it’s elevated AFP, but from what I can tell, that is most likely. The form letter says that because of the results of my 2nd trimester bloodwork (which I did at just after 16 weeks) I am ‘eligible for genetic counseling.’ Oh joy.
I am of course panicking because of MTHFR. My OB said that this 2nd blood test would check for spina bifida and neural tube defects. Neural tube defects are caused by lack of folic acid. MTHFR makes it hard for my body to absorb it. I’m on 1.8mg/day, in a form that is pre-metabolized so my body will have no trouble absorbing. A lot of people don’t know about this pre-metabolized form, amazingly. An accu I saw told me about it. My OB has assured me 1.8mg is fine, although I’ve seen other women on 4mg, 6mg a day. I just read an article that too much folic acid can lead to cancer. Which way do you turn???
If there is reason to be really concerned and my OB has let me find this out in a fucking state form letter, I’m going to be pissed. I just tried to call her; emergency calls only on the weekend.
What does this mean? She may tell me I need amnio (fuck!). I keep hoping that because she hasn’t called, she’s not super concerned. Apparently, there is a super high rate of false positives with this test. And often, if you’ve done DE, they mess up the ages and calculate based on your age. Even though you indicate clearly to them the age of the donor. It’s a state-run test; I am frankly not surprised.
As is so happens, I met with a woman today who had her daughter through DE. We had a lot of war stories to share. Her daughter was so beautiful and so sweet (!!). In a frantic search through all the posts, I found one of hers (we ‘met’ through the forum) and she went through the same shit.
I’m pissed. I feel like I am put through so much. Can’t I just be pregnant and have a happy pregnancy? Haven’t I been through enough?
What the FUCK will I do if an amnio comes back with bad results? I can tell you right now, I am not okay with a child that has developmental issues. I’m not cut out for it and I have not trouble with that. You have to know what you can/can’t handle. And I could not handle that. But what the hell would I do?
Just told the DH and he initially freaked (and looked so sad – it broke my heart!) but we talked and decided that we are also probably fine. But the fear is there.
Would love to hear from anyone else out there who has been through this.
Just… fuck. Why does this shit ALWAYS happen on the fucking weekend?
So sorry you are dealing with this. A friend of mine also was told that she had a high chance of Down’s, they did the amnio, baby was A-OK. It’s a screening test, it’s not a diagnosis. I know it’s tough, but try to wait until you know it’s bad news before you stress about bad news. Nothing Bad Has Happened Yet and all that.
And if they did it on maternal age then… well.. a lot of us would be positive. They do them differently in the country where I had mine, you met personally with the doctor to get your chances calculated, and I made sure that mine did it by my donor’s age.
By: Nishkanu on July 11, 2009
at 4:30 pm
I read on a forum that in the state of CA, it is mandatory to calculate the 2nd test based on BOTH donor’s and bio mother’s age. WTF? I don’t understand why they would do that.
I’m trying really hard not to freak out. DH is being positive and wonderful, assuring me all will be okay. He has been so strong in this pregnancy, he’s been a rock for me. Makes me love him so much more.
By: onwardandsideways on July 12, 2009
at 2:33 pm
First of all, it probably is all fine. Gosh, so many women go through these scary moments and until tests have much lower false positive readings, they will continue to.
I’m sure I’m not understanding the rationale, but when I read that you would not be okay with a child that has developmental issues, I read it as not proceed with the pregnancy (no judgment here – frankly, I agree wholeheartedly!). But then I just wonder why you wouldn’t definitely want to do the amnio? I realize there is a remote risk of miscarriage but, again, it is remote and at least is able to detect all of the issues that are detectable by any methods in a pregnancy and gives you options while you still have time, no?
By: Sky on July 12, 2009
at 12:54 pm
I’m on the fence about amnio. I’m not so sure the risk of miscarriage is that remote. I’ll cross that bridge when I come to it.
By: onwardandsideways on July 12, 2009
at 2:29 pm
Ok- you won’t believe this, but I am in the same boat. We got the call from my ob on Tuesday. Apparently, the average chance of Down’s for someone my age is 1/110. Our’s came back 1/60 for Downs (everything else was normal), which classifies it as a positive test. Basically, it means there is a 1.6% chance that our baby has Downs.
Every couple is different (nothing like stating the obvious, right?). I asked the doctor how long we had to do an amino if we chose to. He said that if we would consider termination, it needed to be done this week, if not, we had until 20 weeks. Alex and I already decided that we would not terminate for Downs (his sister has Down’s, so we have a lot of experience and knowledge of the resources – it’s not an unknown to us), so we have decided against the amino.
I’m so sick of medical procedures with this pregnancy. I just want to be pregnant and feel the baby – away from the doc’s office as much possible.
It’s scary – no doubt. But I just keep saying to myself – 1.6% chance, 1.6% chance – that’s what this positive test means.
It is so crazy how are paths are paralleling through this…
By: Christina on July 12, 2009
at 1:29 pm
I mean, It is so crazy how *our* paths are paralleling – I hate it when I do that
.
By: Christina on July 12, 2009
at 1:40 pm
Totally crazy. I’ve been checking your blog lately, wondering if you were going to post about this. Somehow I just knew you were dealing with it too. Are you my long lost cousin or something? It’s freaky. LOL
I think a 1.6% is like a 98.4% that you’re fine right…?
The thought of termination makes me feel really sick inside, but on the other hand, I know that I can’t handle a baby with these kinds of issues.
I wish it was Monday so I could get some information.
By: onwardandsideways on July 12, 2009
at 2:31 pm
I have no good advice for you. This is a horrible wait you have to go through and I am hoping with all my heart it will all turn out ok for you.
By: Summer on July 12, 2009
at 4:09 pm
I’m so sorry you have to deal with this. Personally, I would opt for the amnio. It has a much lower miscarriage rate than CVS, which is an earlier test. Amnio has a 1/600 miscarriage rate nationwide, though the doctor you see may have an even lower miscarriage rate. I don’t take much stock in the blood tests. Until you have the genetic testing, you really don’t know. I guess ask yourself would amnio put yourself at ease or would your decisions not be affected by the results?
By: Phoebe on July 13, 2009
at 4:31 am
No kidding, this kind of crap sucks! There *definitely* is a huge number of false positives with that test.
What is your gut telling you?
I also have MTHFR (the C677T homozygous variety). I did not start the two-Folgard-per-day until after the genetic testing when I lost my third pg (fourth pregnancy, third loss).
I don’t want to tell you anything that will freak you out, but want you to know that I have had a Down’s pg. That pg started as a twin pg and I lost one VERY early on. The second fetus made it until just before 11 weeks before he died; his nuchal fold was very large at the u/s when we found out he had died. The pathology report showed that he had Down’s. It could have come from a cell-division gone awry due to the twin situation, or it could have been due to the MTHFR. We’ll never know.
I do know that I was on full vitamin support when pg with Charming Boy, and he turned out just fine.
You are doing everything you possibly can to make sure your babe is developing well.
I will be thinking of you and hoping your OB can give you some clear (and reassuring) guidance in the morning. Hang in there.
By: Tonya on July 13, 2009
at 6:27 am