Baby Drama Tuesday (unscheduled)
Just after reading about Bri and Jennifer’s good baby news, I thought “this is a good day for baby news.” I’m still waiting on good news from infertilepediatrican but so far the baby scares have turned out to be nothing.
Then my phone rings. It’s fancy doc’s trusty assistant and she has THAT TONE in her voice. She says, “why would things go smoothly?” and I knew. The triple screen/AFP results were due in today. I’ve been thinking about them and how it would be nice to get a good result. I was actually on the other line with fancy doc’s office, inquiring about those very results, when trusty assistant called.
I have a positive (bad) AFP result, she said, and I should talk to the genetics counselor about an amnio ASAP. The results indicate a 1 in 28 chance of Down’s. That’s down from, let’s see, 1 in 3,681 from the combined screening results.
I spent the next several hours on the phone and this is what I’ve learned and concluded.
** I will be having an amnio tomorrow at 1:00. Mr. AFP isn’t available so I’ll be having it with Dr. Dead Baby.
Dr. Dead Baby is the doctor whose face I saw back in June when I was having my second “surprise, your-baby-is-dead ultrasound.” After the “better machine” was fired up for a closer look at our motionless baby I had my eyes closed. Nobody was saying anything so I opened my eyes and the first thing I saw was the look on this doctor’s face. I’ll never forget that look on his face. It told me that my baby was dead, at 11 weeks. My third dead baby in my life; my second dead baby in six months, to the day, 30 minutes shy of to the hour.
On a positive note, fancy doc has assured me that Dr. Dead Baby is tremendously competent and that I should have him do my amnio ASAP, tomorrow. Otherwise I'd have to wait until Monday. This way I will have FISH results by Friday.
** By Friday I will know (I just learned this from Jennifer’s blog) about chromosomes 13, 18, 21, X and Y. We’ll know for sure if the baby has Downs Syndrome by Friday.
** Apparently the triple screen is a state-mandated crappy test that doesn’t do a very good job of testing for Down’s. It measures three things: AFP, HCG, and UE3.
** My AFP, which is an indicator of spina bifida, is fine. She said spina bifida is not a concern but I just read that low AFP is also an indicator of Downs. My AFP is 1.03 which is normal I believe. My UE3 is a little low at .83.
** My HCG is 3.82, which is high. The state considers it high at 2.5. My doctor considers it high at 3.0. High HCG is correlated with Downs but is more often correlated with a problem with the placenta. The problem could take the form of placenta previa, preeclampsia, or pre-term labor. My doctor is more concerned about those things than about Downs.
** The combined screening test (dried blood and NT u/s) is a much better screen for Downs. That score (1 in 3681) and my good Level II u/s are strong indicators of no Downs.
** So even though the high HCG is considered by the state to indicate a 1 in 28 chance of Downs, my genetic counselor said those results aren’t nearly as reliable as my combined screening and Level II u/s results.
** But I’m going to do an amnio anyway. Mainly for 2 reasons: one is so I can have some peace of mind regarding the baby’s chromosomal health and 2) the new research that I read about is true. The risk of pregnancy loss from an amnio is 1 in 1600. A 10-year study has just been completed and the risk is much lower than it used to be. 1 in 300 is the risk according to research that was done 10 years ago and has been fact until recently. So I feel much better about my chances, having heard that this research is now accepted as fact by fancy docs and his esteemed partners.
I partly can’t even believe that this is happening right now and I’m partly not surprised by anything anymore. After an afternoon spent in coping and information gathering mode, I am feeling a shocked about the whole thing. There’s the funky results for starters, the amnio itself, the worrying afterwards about miscarriage and infection, the waiting for the results, and then the concerns about what the elevated HCG really might mean, e.g. serious placental problems.
Then there is my feeling of disbelief that there are more potential problems to be worried about and dealt with. It’s feeling pretty surreal right now.
UPDATE** I'm extra freaked out now because my son came home from school and announced, "Mama our baby is coming out tomorrow." This from the kid who was in the ER two nights in a row after we lost our last baby because he had excruciating stomach pains. We never figured out what was wrong except we later realized that the pain started the day of the bad ultrasound. He knew about this current pregnancy before we told him. So it freaks me out that he made this announcement. Our baby had better not be coming out tomorrow.
Then my phone rings. It’s fancy doc’s trusty assistant and she has THAT TONE in her voice. She says, “why would things go smoothly?” and I knew. The triple screen/AFP results were due in today. I’ve been thinking about them and how it would be nice to get a good result. I was actually on the other line with fancy doc’s office, inquiring about those very results, when trusty assistant called.
I have a positive (bad) AFP result, she said, and I should talk to the genetics counselor about an amnio ASAP. The results indicate a 1 in 28 chance of Down’s. That’s down from, let’s see, 1 in 3,681 from the combined screening results.
I spent the next several hours on the phone and this is what I’ve learned and concluded.
** I will be having an amnio tomorrow at 1:00. Mr. AFP isn’t available so I’ll be having it with Dr. Dead Baby.
Dr. Dead Baby is the doctor whose face I saw back in June when I was having my second “surprise, your-baby-is-dead ultrasound.” After the “better machine” was fired up for a closer look at our motionless baby I had my eyes closed. Nobody was saying anything so I opened my eyes and the first thing I saw was the look on this doctor’s face. I’ll never forget that look on his face. It told me that my baby was dead, at 11 weeks. My third dead baby in my life; my second dead baby in six months, to the day, 30 minutes shy of to the hour.
On a positive note, fancy doc has assured me that Dr. Dead Baby is tremendously competent and that I should have him do my amnio ASAP, tomorrow. Otherwise I'd have to wait until Monday. This way I will have FISH results by Friday.
** By Friday I will know (I just learned this from Jennifer’s blog) about chromosomes 13, 18, 21, X and Y. We’ll know for sure if the baby has Downs Syndrome by Friday.
** Apparently the triple screen is a state-mandated crappy test that doesn’t do a very good job of testing for Down’s. It measures three things: AFP, HCG, and UE3.
** My AFP, which is an indicator of spina bifida, is fine. She said spina bifida is not a concern but I just read that low AFP is also an indicator of Downs. My AFP is 1.03 which is normal I believe. My UE3 is a little low at .83.
** My HCG is 3.82, which is high. The state considers it high at 2.5. My doctor considers it high at 3.0. High HCG is correlated with Downs but is more often correlated with a problem with the placenta. The problem could take the form of placenta previa, preeclampsia, or pre-term labor. My doctor is more concerned about those things than about Downs.
** The combined screening test (dried blood and NT u/s) is a much better screen for Downs. That score (1 in 3681) and my good Level II u/s are strong indicators of no Downs.
** So even though the high HCG is considered by the state to indicate a 1 in 28 chance of Downs, my genetic counselor said those results aren’t nearly as reliable as my combined screening and Level II u/s results.
** But I’m going to do an amnio anyway. Mainly for 2 reasons: one is so I can have some peace of mind regarding the baby’s chromosomal health and 2) the new research that I read about is true. The risk of pregnancy loss from an amnio is 1 in 1600. A 10-year study has just been completed and the risk is much lower than it used to be. 1 in 300 is the risk according to research that was done 10 years ago and has been fact until recently. So I feel much better about my chances, having heard that this research is now accepted as fact by fancy docs and his esteemed partners.
I partly can’t even believe that this is happening right now and I’m partly not surprised by anything anymore. After an afternoon spent in coping and information gathering mode, I am feeling a shocked about the whole thing. There’s the funky results for starters, the amnio itself, the worrying afterwards about miscarriage and infection, the waiting for the results, and then the concerns about what the elevated HCG really might mean, e.g. serious placental problems.
Then there is my feeling of disbelief that there are more potential problems to be worried about and dealt with. It’s feeling pretty surreal right now.
UPDATE** I'm extra freaked out now because my son came home from school and announced, "Mama our baby is coming out tomorrow." This from the kid who was in the ER two nights in a row after we lost our last baby because he had excruciating stomach pains. We never figured out what was wrong except we later realized that the pain started the day of the bad ultrasound. He knew about this current pregnancy before we told him. So it freaks me out that he made this announcement. Our baby had better not be coming out tomorrow.
posted by whatthef*ck at 5:18 PM
13 Comments:
Oh, for fuck's sake. Can't a person (particularly a person who has been through as much hell as you) get through this without DRAMA? I am so sorry this is happening and you have to go through this. I am glad they are getting you in for the amnio right away. Let's just call it a good WEEK for baby news and we'll all be sending our best thoughts your way all week.
Crap!
I will be thinking of you tomorrow too.
Sheww..I will be thinking of you also.
Oh G-d, I am so sorry you are having to go through this extra thing to worry about. I will be fully focused thinking of you tomorrow and hoping the amnio is swift and safe and the you and the baby are totally ok.
WTF, I'm so sorry for this extra stress and worry which you of all people did not need.
I'll be thinking of you tomorrow and wishing for good outcomes all round.
love Rosepetal
If you have any questions regarding the Amnio or Genetics I can most likely help you out. With my situation I went trough tones of Genetic counseling and did tons of research on Chromosomes. I also have had to Amnio’s, one with my daughter I lost and the last with my son I just had. I hope your AFP was a false positive and all is well. You and your little one are in my thoughts.
Well, considering I am right in the middle of this crap, I can say I know how you feel. And it fucking sucks. First, let me say that there is a very high percentage of false positives for that test that you had. I personally know two people who had false positves (in fact, one woman had it with two pregnancies). It happens A LOT. Those screens are just stupid. Second, DS usually has significant other markers. And your u/s was fine. No heart issues or nose/facila issues or growth issues or femur issues or any of that. DS RARELY shows up without at least an u/s marker and you had a big fat zero. Third, fuck the hormone levels. I am pretty sure my change on a daily basis. Hourly even. Fourth, nuchal, like the dr. said, is a much better indicator. And yours was fine. And fifth, the reason why your odds went up is prob. becasue you are of "advanced maternal age," right? I am 34 so they were all up in arms. If i were 24, there wuldn't even be talks of amnio. Yet statistics proves that something ike 70 percent of all DS cases are born to women under 30.
I am so glad you are doing the FISH and that you will get it by friday. At least you don't have to wait over the weekend. You will feel tremendously reassured in a mere 36 hours.
Info from just one site; one of many that say the SAME thing:
from http://www.babycenter.com/refcap/1487.html
"Only about 3 to 5 percent of women will receive a positive (abnormal) result on the multiple marker — and on average, only about 10 percent of those women will actually have a baby with a problem. That adds up to a lot of false positive results."
So only TEN percent of those women who get a positive actually have a baby with a problem??? And that is any problem, not just DS? Why do they allow this stupid test??
This storm is going to pass, I promise.
{{{hugs}}} Thinking of you and wishing you only good things.
My best thoughts will be with you and your little one today.
Sending you white light today.
Fuck - I'm sorry that you are having to go through this. Like Jennifer said, there are a lot of false positives with this test (with all screening tests - you want to make sure you don't miss any so by design all screening test accept a certain high percentage of false positives, as long as there are almost no false negatives). I just saw a healthy baby today whose mom had an amnio for this very same reason and of course everything was normal.
I will be thinking of you today and wishing you well in your amnio. I'm glad that you get results this week and aren't like Jennifer who had to agonize through a holiday weekend.
Craptastic. I am sending you so much love right now. I also want to tell you that I think your son is wrong about the baby being born today, but he is SO scared. Maybe you can do something special with him, or let him enact his fears and worries with his cars and trains? I am sorry you have to worry about his feelings too. But I am very sure he is not being prophetic, but rather, terrified. Which is better, but not by much. Call me. I love you.
Hi,
I went through amnios etc. and we also had a child diagnosed with a chromosomal problem, so we've been through genetic counselling, etc. etc. I agree with everything your Doc said about the AFP vs. the nuchal result, and I'm sure you're amnio will go fine. Even the one in 1600 result comes from a global group, including small centers where they don't do very many. Your Doc sounds very skilled, so don't worry about that part.
If you want to ask me anything, feel free to email.
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