**lurking @chichiphin I am so sorry that you're dealing with this. My H and I went through the same thing in January. Always available to PM if you want to talk to someone who has been through it.
*lurking* @chichiphin I was awake half the night staring at the ceiling trying to find the words, but they never came. Sending love and prayers to you and YH in the coming days and weeks. I am so very sorry.
TTC History:
Me: 36 MH: 39, TTC since Dec 2017
Aug '18: PCOS dx
Nov '18: MH SA - 19mil
Dec '18-Mar '19: Letrozole + TI - all BFN
Apr '19: Letrozole + TI, - BFN. Repeat SA (27mil) & DNA fragmentation test (17%)
@chichiphin I am so sorry you find yourselves in this situation. No matter the outcome we are here for you and I pray for a miracle for you and your family. Hugs to you
Thank you everyone - and I just want to say, please don’t let my news stop people from sharing good news with your NIPT results! This thread is for everyone - good, bad, ugly. But let’s hope for overwhelmingly good ❤️
@chichiphin- that's really kind of you. I am so sorry to hear your news. I know you guys are going through a tough time and my thoughts and prayers are with you both. Please keep us posted on how you are doing. So many hugs .
So I have a question for everyone doing testing. I had my first appointment with the OB last week. The NIPT they use is MaterniT. She said that I don't need to do an NT ultrasound because the NIPT test is very accurate. But it seems like a lot of women are doing both. What does your OB/midwife recommend?
@sparkles5275 I would insist on the ultrasound. Unless it's a karyotype (it's not) it does NOT pick up everything. It just picks up the most common chromosome issues. With my first pregnancy my blood work came back PERFECT, super low risk.. Our red flag actually came from the scan.
Just got the progenity results back and they're all low risk! I cried. I am so relieved. My OB doesn't normally do an NT scan, but I may ask them to this time since things have been so up and down.
*TW*
Me: 32 │ DH: 35 Married 8/16/13 BFP#1 DS 11/13/16 BFP# 2 MMC dx @ 13w 10/30/18 BFP# 3 Preemie DD born at 38w (IUGR) on 8/28/19 weighing 5.5lbs. Our little miracle
@sparkles5275 My doctor recommended both the scan and the NIPT as protocol for being 35 and over. I was sent to a perinatal clinic for both. I just went today, and the scan is just a really good look at the whole body of the baby. It can definitely be something that people opt out of, but if you qualify, you can certainly ask about it. I didn’t do the 12 week scan for my other pregnancy as I was 30 at the time.
@sparkles5275 My OB does both. When I had the US, the lady basically made a comment how the US was kind of a formality since my NIPT results were already back. It was super fun though to have a long US and watch her measure all the body parts.
I want to echo what @nomangos23 said - in the past week I have learned that an enlarged NT measurement can mean WAY more than the 4 items the NIPT tests for that are still life threatening to the fetus. Please everyone push for the NT scan!
ETA: sorry that sounded very doomsday. What I want to convey is that if the NIPT is low risk, that is fantastic! however - still get the scan, bc there are a lot more reasons for an elevated NT that may need intervention or further discussions/opinionS.
@chichiphin I couldn't agree more. It's important that we as patients understand the limitations of these tools.
I always got the NT even when I was under 35 because my Dr. insists. The NT will give you more information about the overall health of the fetus. @chichiphin mentioned, the NIPT will give you your risk profile for very specific disorders. I actually scheduled a call with the company (Natera, in my case) and asked all of my questions. They were really helpful. I highly recommend for anyone who wants to understand what their results specifically mean.
Had my NT and NIPT today. The tech said everything looked good, but the doctor will call in the next day or so to confirm. NIPT results will be early next week likely. @chichiphin I'm so sorry to hear your news
I had my scan and bloodwork today (just the screening for disorders not sex). The tech said everything looked great so that's a relief. Scheduled my anatomy scan for May 1st which seems like a lifetime away. But SIL wants to gift us an elective ultrasound so hopefully we will know babys sex in a couple weeks!
Anyone else done Panorama test? I got my results today and had questions. So I started searching Google, not helpful. Called Natera and the customer service girl scheduled a lab tech to call me. Apparently twins throws them for a loop when it comes to questions about fetal fractions?
@cheshyre319 I did Panorama - curious if you were able to access your results on the website? Last time I remember I was able to track it and then download the file when the results were in, but this time, I don't see any of that?
We had our NS US on Tuesday. Our ultrasound tech was very thorough. I knew we were looking at the back of the neck for thickness. He kept going back to the head, looking for profile and birds eye view of skull. After showing photos to doctor he came back and did more US
I started
To suspect something was wrong- he was clearly looking for
Something but didn’t say what.
We met with the genetic counselor and she said baby doesn’t have a nasal bone and that “we are concerned.”
I got the NIPT blood draw
And am
Now waiting the two weeks for results
My DH is hoping that there’s
Nothing wrong... but the genetic counselor definitely didn’t give us any false hope.
If NIPT confirms high risk for trisomy 13 we will do amneo (ugh) and then wait another two weeks for results
DH is searching for success stories
Or tales of people getting a false positive. He says maybe the nasal
Bone will appear in a few weeks and we will have worried for
Nothing.
It’s hard for me to think positive right now. But I also can’t give up. Because he’s right. What if she IS fine?
I won’t be at peace until I get a
Definitive answer. This waiting is hard.
I fully expected to see baby and hear “yep, she looks
Good!”
To hear “we are
Concerned” was such a blow.
I was definitely in shock Tuesday afternoon. I was eerily calm. Just thinking “ok, what’s the next step? What tests do we need?”
Absolutely logical. Today, however, I’m all emotions and racing thoughts.
Searching for a trisomy 13 support
Group but no luck so far.
It’s gonna be a long two weeks.
@moxyligeia I'm so sorry you're going through this, that wait sounds excruciating. I will be thinking of you and your husband, and sending good thoughts to you.
@moxyligeia I am so sorry you are in this waiting game of uncertainty. I hope that you get excellent results from your blood work and that there is nothing to be concerned with. Will be praying for you.
@moxyligeia I am so sorry you are in this horrible waiting game. I can't even imagine. I will be thinking of you and your LO and hoping everything is ok!
*TW*
Me: 32 │ DH: 35 Married 8/16/13 BFP#1 DS 11/13/16 BFP# 2 MMC dx @ 13w 10/30/18 BFP# 3 Preemie DD born at 38w (IUGR) on 8/28/19 weighing 5.5lbs. Our little miracle
@moxyligeia I'm sorry you are going through this right now. unfortunately I get it, really I do. If you haven't already, I would suggest getting a referral (unless you aren't required by insurance) to be seen by an OB in a Maternal Fetal Medicine group. fight for another U/S with the MFM OB and see what they find. I'm so sorry
@moxyligeia I am so sorry to hear this. I hope the days pass quickly and there’s nothing but good news on the horizon for you. Sending you love and strength.
@LittleMiss84 same as above. Went on Thursday, results following Wednesday. You can call Natera and ask if it’s been processed or for the timeline. They were super helpful.
@LittleMiss84 same as above. Had blood taken last Monday and results were in yesterday (tho dr wasn’t open till today). I called Natera this morning and was able to confirm that results had been sent before I contacted my OB.
@moxyligeia I am so sorry you are in limbo. I would definitely seek a second opinion if you can. FWIW my niece was told that her 3rd baby had a host of issues that taken together probably meant a major chromosomal issue. After further testing, they were told she was fine and she was born perfectly healthy. I don't want to give you false hope, but hang in there.
Did anyone reading decline the testing? I’m so anxious I sort of want to skip extra testing due to how sick I make myself leading up to ultrasounds but having second thoughts. Also worried about false positives and leading to extra stress and worry. Thoughts?
Re: NT/NIPT Discussion Thread
@chichiphin I am so sorry that you're dealing with this. My H and I went through the same thing in January. Always available to PM if you want to talk to someone who has been through it.
@chichiphin My heart sank when I this. I'm so sorry you and YH are going through this. Hugs to you.
@chichiphin I was awake half the night staring at the ceiling trying to find the words, but they never came. Sending love and prayers to you and YH in the coming days and weeks.
TTC History:
Me: 36 MH: 39, TTC since Dec 2017
Aug '18: PCOS dx
Nov '18: MH SA - 19mil
Dec '18-Mar '19: Letrozole + TI - all BFN
Apr '19: Letrozole + TI, - BFN. Repeat SA (27mil) & DNA fragmentation test (17%)
Aug '19: Letrozole + HCG trigger + IUI + prog supp - BFN (MH: 16mil)
Sep '19: 2nd IUI, same protocol - BFN (MH: 16mil)
Dec '19: IVF #1 w/ICSI, PGT. 5 retrieved, 4 fertilized, 3 blasts, 3 PGT-A normal.
Mar '20: FET #1, perfect 5AA blast transferred. BFN.
Sept '20: FET #2, 5BB tsf. 9/18/20 BFP!! EDD: 5/27/21. MMC 11w
Feb ‘21: FET #3, last 6BB blast transferred. BFP, EDD 11/2/21. MC 5w3d.
May '21: IVF #2 w/ICSI, PGT. 8R, 7M, 6F, 6 blasts - 3AB, 3AB, 3BB, 4BB, 5BB, 6BA. Fresh tsf 5/13/21 - BFN.
June '21: PGT-A results = 3 abnormal, 1 low level mosaic. Referred to new REI, had consult with 2nd RE in between.
Sept '21: RPL, immune testing normal
Oct '21: IVF #3 w/IMSI, PGT. 33R, 26M, 23F, 9 blasts (7 day 6, 2 day 7). PGT-A = 5 normal, 1 mosaic
Dec '21: Positive for endometritis, RX Flagyl & Keflex
Jan '22: FET #5 - Kitchen sink immune/RIF protocol incl. PRP, intralipids, prednisone, medrol, nivestym, fragmin - CP
Feb '22: FET #6 - Kitchen sink immune/RIF protocol w/higher doses of pred & fragmin - BFN
Mar '22: Mock cycle for ERA - cancelled, repeat endometrial biopsy instead. Still positive for endometritis. RX ciprofloxacin & amoxicillin.
Apr '22: IVF #4 w/IMSI, PGT. 28R, 23M, 16F, 11 blasts. PGT-A = 6 normal.
June '22: FET #7 - Microdose lupron downreg w/kitchen sink immune/RIF protocol - double embryo transfer. BFN.
July '22: FET #8 - Mini stim w/Puregon + trigger, kitchen sink immune/RIF protocol. BFN.
Sep '22: Taking a break
Dec '22: Attempted abdominal myomectomy, fibroid too close to cervix and major blood vessels. Wasn't removed.
Feb '23: FET #9 - Modified natural w/baby asp, HCG trigger, PIO, PRP, Medrol, HCG wash, embryo glue - BFP!! EDD 11/11/23
@chichiphin I'm so sorry you have to make this decision. Lots of hugs to you and your hubby.
married 11.1.14
ttc #1 since 5.18
bfp 12.22.18 letrozole + progesterone
d&e due to trisomy 13/hydrops at 15wks
bfp 7.21.19 letrozole + IUI
little girl A born 3.26.20
DS: 18 months
Dx DOR AMH .2
<a href="http://www.thebump.com/?utm_source=ticker&utm_medium=HTML&utm_campaign=tickers" title="Pregnancy"><img
Married 8/16/13
BFP#1 DS 11/13/16
BFP# 2 MMC dx @ 13w 10/30/18
BFP# 3 Preemie DD born at 38w (IUGR) on 8/28/19 weighing 5.5lbs. Our little miracle
Edited to include that I'm >35 yo.
ETA: sorry that sounded very doomsday. What I want to convey is that if the NIPT is low risk, that is fantastic! however - still get the scan, bc there are a lot more reasons for an elevated NT that may need intervention or further discussions/opinionS.
married 11.1.14
ttc #1 since 5.18
bfp 12.22.18 letrozole + progesterone
d&e due to trisomy 13/hydrops at 15wks
bfp 7.21.19 letrozole + IUI
little girl A born 3.26.20
I always got the NT even when I was under 35 because my Dr. insists. The NT will give you more information about the overall health of the fetus. @chichiphin mentioned, the NIPT will give you your risk profile for very specific disorders. I actually scheduled a call with the company (Natera, in my case) and asked all of my questions. They were really helpful. I highly recommend for anyone who wants to understand what their results specifically mean.
DS: 18 months
Dx DOR AMH .2
<a href="http://www.thebump.com/?utm_source=ticker&utm_medium=HTML&utm_campaign=tickers" title="Pregnancy"><img
@chichiphin I'm so sorry to hear your news
1st Baby 5/12/17, Henry
We are team team green and man - it’s a longer road to stick it out with this technology! But- I believe in us haha
We had our NS US on Tuesday. Our ultrasound tech was very thorough. I knew we were looking at the back of the neck for thickness. He kept going back to the head, looking for profile and birds eye view of skull. After showing photos to doctor he came back and did more US I started To suspect something was wrong- he was clearly looking for Something but didn’t say what. We met with the genetic counselor and she said baby doesn’t have a nasal bone and that “we are concerned.” I got the NIPT blood draw And am Now waiting the two weeks for results My DH is hoping that there’s Nothing wrong... but the genetic counselor definitely didn’t give us any false hope. If NIPT confirms high risk for trisomy 13 we will do amneo (ugh) and then wait another two weeks for results DH is searching for success stories Or tales of people getting a false positive. He says maybe the nasal Bone will appear in a few weeks and we will have worried for Nothing. It’s hard for me to think positive right now. But I also can’t give up. Because he’s right. What if she IS fine? I won’t be at peace until I get a Definitive answer. This waiting is hard. I fully expected to see baby and hear “yep, she looks Good!” To hear “we are Concerned” was such a blow. I was definitely in shock Tuesday afternoon. I was eerily calm. Just thinking “ok, what’s the next step? What tests do we need?” Absolutely logical. Today, however, I’m all emotions and racing thoughts. Searching for a trisomy 13 support Group but no luck so far. It’s gonna be a long two weeks.
Married 8/16/13
BFP#1 DS 11/13/16
BFP# 2 MMC dx @ 13w 10/30/18
BFP# 3 Preemie DD born at 38w (IUGR) on 8/28/19 weighing 5.5lbs. Our little miracle
married 11.1.14
ttc #1 since 5.18
bfp 12.22.18 letrozole + progesterone
d&e due to trisomy 13/hydrops at 15wks
bfp 7.21.19 letrozole + IUI
little girl A born 3.26.20