Sorry for the double (or quadruple) posts. For some reason, I missed a bunch of your responses earlier, and I don't want to seem like I'm ignoring anyone because your support has been incredible and much needed!
I just got a call from my doctor that me AFP came back high risk for spinal bifida. I was at my specialist on Friday for ultrasounds and she said everything looked fine, blood test was done on Saturday. My ob is not worried since the specialist didn't see anything but that's not sitting easy for me so I am hoping I can see or talk to her tomorrow (office closed today) about the ultrasound. Its going to be a long night for sure!
My new OB's office called me earlier and let me know that our AFP came back normal Unless something comes up during the anatomy scan, we're all done with genetic testing. If sh!t hits the fan on LO's birthday, we have a level III NICU in town (but not in the hospital I'll be planning my delivery).
NTNP since Dec 2012 | TTC since Jan 2016 Dx: Unspecified IF BFP#1 Nov 2017 • Blighted Ovum + MMC • D&C at nine weeks BFP#2 Apr 2018 • It's a boy! • Born 13 Dec 2018
@babyluv1234 I really hope it's nothing. Did they give you any numbers? Sometimes what they consider "high" is still lower than 1%. If they didn't see anything during the ultrasound I would try not to worry too much. I know it's easier said than done, but try. And waiting to see the doctor and get answers will seem like forever. No sugar coating that. Try to relax if possible.
At risk of sounding dumb, what is AFP? Obviously it is a genetic test but what does it stand for?
On a personal note, at my blood draw today for part 2 of my sequential screen, my nurse reviewed the results of part 1. Low risk for trisomy 18 and 21! But she said those numbers aren't "final" until part 2 results come back. Part 2 tests for spina bifida and trisomy 13 in addition to retesting for 18 and 21. Hopefully all will come back low risk. Now, WAITING. 7-10 business days is so long.
@scaredunprepared From the Googlemachine "Alpha- fetoprotein (AFP) is found in both fetal serum and also amniotic fluid. This protein is produced early in gestation by the fetal yolk sac and then later in the liver and gastrointestinal tract. ... High levels of AFP may suggest the developing baby has a neural tube defect such as spina bifida or anencephaly." So it's just another screen, not diagnostic
NTNP since Dec 2012 | TTC since Jan 2016 Dx: Unspecified IF BFP#1 Nov 2017 • Blighted Ovum + MMC • D&C at nine weeks BFP#2 Apr 2018 • It's a boy! • Born 13 Dec 2018
@echo-charlietango thanks for doing the work for me! I honestly don't know why I didn't just Google it myself. I think my brain has officially stopped working. Sounds like my sequential screen is considered an AFP?
@scaredunprepared Sounds like your second screen just includes AFP The difference with screenings I've noticed are just what abnormalities companies look for. My first screen covered all of the common trisomies and carrier status. My second screen was just for AFP because we agreed that it would be a good compliment to my initial screen (since AFP was the only marker that my first screen didn't look at).
NTNP since Dec 2012 | TTC since Jan 2016 Dx: Unspecified IF BFP#1 Nov 2017 • Blighted Ovum + MMC • D&C at nine weeks BFP#2 Apr 2018 • It's a boy! • Born 13 Dec 2018
Welp. After the great news about SO not being an SMA carrier, my AFP and HCG came back high . I know it's just a screening but this is such a roller coaster. I'm scheduled for an amnio and level 2 ultrasound, 1 next week and 1 the week after since im just 18wks tomorrow. I haven't cried like that in a long time. So stressful and frustrating.
@shygirl88 I am so sorry you are having a tough time. Sounds like you need to fill your days with hobbies/movies until your next round of tests. Stressing out isn't going to make it better, but maybe filling your days with other things will distract you enough..
I have an ultrasound on Tuesday to try to get more information. Also, possible amnio. Luckily I'm with friends all weekend for a bachelorette party so I'm staying distracted... most of the time. Thanks everyone.
Thinking of you @shygirl88 and hoping you get more info with the next ultrasound (and possible amnio) and that it's all good news! So sorry you're having to deal with this worry and stress!
@scaredumprepared@katy0990 I was not able to see my regular specialist but I saw someone that was covering her patients. They did an ultrasound and she said baby looked fine. She gave me 90% chance that baby is fine. I have a follow up with my doctor this Friday.
@katy0990 yes she didn't say 100% because baby was pressed against the uterus wall and she couldn't see the tail bone to clearly. But yes I am so relieved, I cried like a baby when I got the news. This weekend we have our reveal party! cant wait to find out what it is!
@babyluv1234 what great news! Hopefully at your follow up they can completely put your fears to rest! Enjoy your reveal party, you've got a lot to celebrate
So I had might level 2 ultrasound yesterday. They didn't find anything wrong with baby's anatomy! Yay. So they are no longer really worried about the high AFP and HCG except to do growth scans at 31 and 36 weeks. I do need to repeat the anatomy and growth scan in 3 weeks since little one played hide and seek. Plus it was at 18w4d instead of 20.
Here is the trippy news: my NIPT told us we were having a boy back at 11wks. This ultrasound clearly showed us that we are having a GIRL!! We decided to proceed with the amnio to test for the chromosomes to see if the baby is chromosomally male but anatomically female. They said likely the first blood test was wrong but small chance of discordant gender. So crazy.
@shygirl88 yay! Glad all seems well with baby. How interesting that nipt may be incorrect. Whatever baby is, the most important thing is that there doesn't seem to be anything wrong.
@shygirl88 glad everything seemed fine in the scan.
As for the NIPT, could it be that early on you had 2 sacs and one didn’t develop and then disappeared?
I had two sacs at the 5 weeks scan. It was obvious that one has not developed. Then at 9w I had only one sac, the other one disappeared.
They said I can’t do the NIPT because my blood might still have DNA from the first sac. So they won’t be able to tell what belongs to disappearing sac and what belongs to the one that remained.
As for amnio, not sure if you had one in the past or not. I had one done 2 weeks ago. And it was really not a big deal. Didn’t hurt at all. I just tried to focus on my breathing when they performed the procedure. After that I was a couch potato for 2 days. 1 day would have probably been enough. But the second day was the 4th of July. So I figured I’d just continue to rest.
TTC history in spoiler box:
Me: 42, single Hysteroscopy: 2013 IUI #1-2: 2013 BFN Surgery 10/2015: Planned to start trying again but had a surgery. (Not related to fertility) Surgery 5/2016: Planned to start trying again but had another surgery. (Not related to fertility) IUI #3-5 (with Clomid): summer 2016 BFN IVF #1: 11/2016. 30R; 21M; 20F; 8B (6 day5 & 2 day6); 4 normal after PGS Medicated FET #1: 1/31/2017 transferred 1 embryo 3AA. BFP. Embryo stopped growing at 6w 1d. MUA at 9w 3d. Medicated FET #2: June 2017 - cancelled... Hysteroscopy #2: June 2017 Medicated FET #2: 8/7/2017 transferred 1 embryo 5BB. BFP. Ended in CP. Medicated FET #3: 10/11/2017 transferred 1 embryo 3AA. BFN ERA: December 2017 - need an extra 12 hours of PIO Medicated FET #4: 1/24/2018 transferred 1 embryo 4AA. BFN Out of embryos. IVF #2: 03/2018.
@prudence9-2 Hey. So I thought about that and I had an early ultrasound due to bleeding (around 5wks and 6wks), there was only 1 sac. But the maternal fetal medicine doctor said that my fetal fraction was so low they should have re-drawn me and should have never reported on that. It irritates me that they just gave me the results all willy nilly like that. So most likely the blood test is inaccurate. She said we all have some parts in our bodies that can express XY even if we are XX and that can be picked up sometimes. I did the amnio on Tuesday, i hated it but I was also extremely emotional and I was having braxton hicks that were causing extra cramping/tightening. I just talked to the genetic counselor and since i already did the amnio they are going to send it out for SMA testing anyways. At least i'll be able to tell her later in life if she is a carrier or not before she conceives *hopefully. Thanks to everyone for listening. Best wishes to anyone also going through all of this very stressful testing.
@Katzalia they said 1wk earliest, hopefully no more than 2 weeks. I was really hoping to announce by 20 weeks...so we will see. I'm 18w6d today. I've been very careful out in public at stores to avoid seeing a lot of ppl who don't know ha! I am showing pretty good.
Re: Genetic Testing Results Thread
*Rainbow 8/2015*
*Expected Rainbows 12/2018*
*Loss of Twin 5/2018*
@Katzalia thank you!
Sorry for the double (or quadruple) posts. For some reason, I missed a bunch of your responses earlier, and I don't want to seem like I'm ignoring anyone because your support has been incredible and much needed!
hello all,
I just got a call from my doctor that me AFP came back high risk for spinal bifida. I was at my specialist on Friday for ultrasounds and she said everything looked fine, blood test was done on Saturday. My ob is not worried since the specialist didn't see anything but that's not sitting easy for me so I am hoping I can see or talk to her tomorrow (office closed today) about the ultrasound. Its going to be a long night for sure!
Unless something comes up during the anatomy scan, we're all done with genetic testing. If sh!t hits the fan on LO's birthday, we have a level III NICU in town (but not in the hospital I'll be planning my delivery).
Dx: Unspecified IF
BFP#1 Nov 2017 • Blighted Ovum + MMC • D&C at nine weeks
BFP#2 Apr 2018 • It's a boy! • Born 13 Dec 2018
@babyluv1234 I really hope it's nothing. Did they give you any numbers? Sometimes what they consider "high" is still lower than 1%. If they didn't see anything during the ultrasound I would try not to worry too much. I know it's easier said than done, but try. And waiting to see the doctor and get answers will seem like forever. No sugar coating that. Try to relax if possible.
At risk of sounding dumb, what is AFP? Obviously it is a genetic test but what does it stand for?
On a personal note, at my blood draw today for part 2 of my sequential screen, my nurse reviewed the results of part 1. Low risk for trisomy 18 and 21! But she said those numbers aren't "final" until part 2 results come back. Part 2 tests for spina bifida and trisomy 13 in addition to retesting for 18 and 21. Hopefully all will come back low risk. Now, WAITING. 7-10 business days is so long.
Dx: Unspecified IF
BFP#1 Nov 2017 • Blighted Ovum + MMC • D&C at nine weeks
BFP#2 Apr 2018 • It's a boy! • Born 13 Dec 2018
Dx: Unspecified IF
BFP#1 Nov 2017 • Blighted Ovum + MMC • D&C at nine weeks
BFP#2 Apr 2018 • It's a boy! • Born 13 Dec 2018
I haven't cried like that in a long time. So stressful and frustrating.
I am so sorry you are having a tough time. Sounds like you need to fill your days with hobbies/movies until your next round of tests. Stressing out isn't going to make it better, but maybe filling your days with other things will distract you enough..
@scaredunprepared yay for DH not being a carrier!! Sorry, I just opened this thread for the first time in a while, so belated congrats!!
DS2 due 12/12/18
@CecilB93 thank you so much!
Here is the trippy news: my NIPT told us we were having a boy back at 11wks. This ultrasound clearly showed us that we are having a GIRL!! We decided to proceed with the amnio to test for the chromosomes to see if the baby is chromosomally male but anatomically female.
They said likely the first blood test was wrong but small chance of discordant gender. So crazy.
As for the NIPT, could it be that early on you had 2 sacs and one didn’t develop and then disappeared?
I had two sacs at the 5 weeks scan. It was obvious that one has not developed. Then at 9w I had only one sac, the other one disappeared.
They said I can’t do the NIPT because my blood might still have DNA from the first sac. So they won’t be able to tell what belongs to disappearing sac and what belongs to the one that remained.
As for amnio, not sure if you had one in the past or not. I had one done 2 weeks ago. And it was really not a big deal. Didn’t hurt at all. I just tried to focus on my breathing when they performed the procedure. After that I was a couch potato for 2 days. 1 day would have probably been enough. But the second day was the 4th of July. So I figured I’d just continue to rest.
Hysteroscopy: 2013
IUI #1-2: 2013 BFN
Surgery 10/2015: Planned to start trying again but had a surgery. (Not related to fertility)
Surgery 5/2016: Planned to start trying again but had another surgery. (Not related to fertility)
IUI #3-5 (with Clomid): summer 2016 BFN
IVF #1: 11/2016. 30R; 21M; 20F; 8B (6 day5 & 2 day6); 4 normal after PGS
Medicated FET #1: 1/31/2017 transferred 1 embryo 3AA. BFP. Embryo stopped growing at 6w 1d. MUA at 9w 3d.
Medicated FET #2: June 2017 - cancelled...
Hysteroscopy #2: June 2017
Medicated FET #2: 8/7/2017 transferred 1 embryo 5BB. BFP. Ended in CP.
Medicated FET #3: 10/11/2017 transferred 1 embryo 3AA. BFN
ERA: December 2017 - need an extra 12 hours of PIO
Medicated FET #4: 1/24/2018 transferred 1 embryo 4AA. BFN
Out of embryos.
IVF #2: 03/2018.
Hey. So I thought about that and I had an early ultrasound due to bleeding (around 5wks and 6wks), there was only 1 sac. But the maternal fetal medicine doctor said that my fetal fraction was so low they should have re-drawn me and should have never reported on that. It irritates me that they just gave me the results all willy nilly like that. So most likely the blood test is inaccurate. She said we all have some parts in our bodies that can express XY even if we are XX and that can be picked up sometimes. I did the amnio on Tuesday, i hated it but I was also extremely emotional and I was having braxton hicks that were causing extra cramping/tightening. I just talked to the genetic counselor and since i already did the amnio they are going to send it out for SMA testing anyways. At least i'll be able to tell her later in life if she is a carrier or not before she conceives *hopefully.
Thanks to everyone for listening.
Best wishes to anyone also going through all of this very stressful testing.
I've been very careful out in public at stores to avoid seeing a lot of ppl who don't know ha! I am showing pretty good.