I don't know why I thought I'd be able to do NIPT with twins - it makes sense that it wouldn't be accurate. But I'm so disappointed. That was one of the few perks of being pregnant over 35.
@ruby696 Aww, I'm sorry. I hadn't thought about that, but it makes sense. Although are there still not certain things they can test for? I understand why you might not be able to get sex from it, but I would have thought the other stuff could still be tested.
**TW**
Me: 35 | H: 40 Married Sept. 2013 DS1: Nov 11, 2016 MMC: 11/16/18 (9w6d) CP: 2/3/19 (5w3d) BFP! 8/24/19 DS2: May 10, 2020
@shamrocandroll I'll definitely ask my doctor. It made me feel so much better last time knowing I was low risk. I feel kind of ridiculous being pissy that I actually have to wait till the NT and AS, like most people. I need to get over myself. 😆
OK, SO! I just got out of my genetics appointment, and I got a lot of great information regarding NIPT vs. NT. So I'm going to just blurt it all out here before I forget it. The counselor was so wonderful, understanding, supportive, and thorough, and I left feeling really really good about our plan moving forward.
Background for those who may not be familiar with my story (TW for loss):
My first pregnancy with DS was low risk across the board, so I never even looked into the option of NIPT because there was no reason for it, and everything on my NT scan came back low risk. I had my IUD removed in July 2018, and we started to TFAS. I got pregnant twice between July '18 and Feb '19 and both ended in loss.
This go around, I'm all about as much information as possible, since I do not have the benefit of knowing what may have caused our issues. I will also be turning 35 about 2 weeks after my due date. I inquired with my OB about NIPT and was told I would need to choose between NIPT and an NT scan because they don't do both. I was frustrated because I was willing to pay out of pocket for the NIPT and didn't understand why I couldn't also do the NT scan.
My visit this morning was wonderful. She listened to my concerns and anxieties (and I even choked up a little bit, which I wasn't expecting), and made sure I was able to say everything on my mind and ask any questions before she started to explain options to me. She ran me through a variety of scenarios regarding NT, NIPT, CVS, and amnio.
She explained to me that the main difference between an NT scan and a standard scan isn't really visible to the patient, and therefore wouldn't necessarily feel different, but that for an NT scan, they use technicians who are specifically trained in measuring the thickness of the fluid buildup on the back of the baby's neck. This is a very precise measurement, and the tech is highly trained and certified to perform it. This measurement, along with some 1st trimester blood work, gives you a range of risk for conditions such as down syndrome and trisomy 18. If you come back with an elevated risk flag from your scan, then you would forego doing 1st trimester blood work and go straight to genetics to get the Harmony test. The reason they do not like to do both tests in conjunction is because it's possible for the NT scan to come back elevated and the Harmony to come back low risk, and they would always default to the Harmony risk level, but then you have two risk factor numbers and unnecessary anxiety for the expectant mother. So, they prefer to skip over the NT scan and go for the more precise Harmony screening for higher risk pregnancies to avoid the unnecessary redundant and possibly conflicting information. In the case of an elevated risk coming from the Harmony test, we would then discuss the options regarding invasive CVS vs. amnio testing, and the risks associated with them (namely a slight increase in miscarriage risk).
She asked me what I would like to do, and I told her I would like to take the most accurate non-invasive screening test possible, but that I did not want to do it at the sacrifice of getting a ~12 week scan and having to wait until 18+ weeks to know whether or not we may have missed something that could have been caught at a 12 week scan. I then explained to her that one of the reasons I was anxious was because I didn't want to go 10 weeks (between my 8 week viability scan and my 18 week anatomy scan) without receiving some confirmation that everything still looks okay, the baby still has a heartbeat, and that my SCH has resolved. I explained to her that while my OB doesn't have me on pelvic rest because of my SCH, I've been mostly doing one anyway out of an abundance of caution and not wanting to increase my risk of spotting or bleeding, and raise my anxiety any further. At that point she asked me if I would be agreeable to a Harmony test in conjunction with a standard, non-NT scan to check for those sorts of things prior to my anatomy scan. I asked if there was anything that could potentially be missed by doing Harmony and a scan but not the NT measurement, and she told me there wasn't, really.
We then talked about other genetic factors that could come into play (such as Tay-Sachs, since MH is French Canadian) and tests that could be run to cover those bases. We landed on the plan that I would have the Harmony Test and a standard 12 week ultrasound, with an added genetic screening for Tay-Sachs carrier status. I've already had carrier screening for cystic fibrosis and spinal muscular atrophy. Oh, and she looked into my insurance and said there's no reason she could see why they wouldn't cover the Harmony test, so yay to that!
Whew! That was a lot. Overall, I'm feeling really positive after my visit today, and feeling good about our plan moving forward. I feel like she really went above and beyond to make sure I felt good about the plan, and she was really just so wonderful. I'm also finally letting myself get a little bit excited!
ETA correction
**TW**
Me: 35 | H: 40 Married Sept. 2013 DS1: Nov 11, 2016 MMC: 11/16/18 (9w6d) CP: 2/3/19 (5w3d) BFP! 8/24/19 DS2: May 10, 2020
another thing that isn't super clear to me is, we did PGS testing on our embryos before transferring them. I wonder if there's a case where even though they were rated as normal, something was missed or just not screened for.
I have never done genetic testing by my doctor's office seems to push for it. I guess if insurance doesn't cover it they have a deal with the lab that would make it $180 max (and we find the gender early which is cool). I am curious what peoples' experiences with it have been? Have you found it worthwhile? How likely are they to find that you are a carrier or a genetic issue? Have your significant others had to get tested if you were the carrier of a genetic issue (my doctor's office mentioned if I carry an issue gene that then my hubby would have to be tested to see if he does as well). It feels like a really weird door to open or road to go down. I don't think there is anything we'd find out that would make us not have the baby so part of me is scared to find out we are both carriers or a terrible genetic issue or that something could go wrong.
@doctorcrime We opted not to do genetic carrier screening. They test for a bunch of different things and depending on your heritage determines if you are more at risk of certain things as they stem from certain parts of the world genetically. If you are not from one of these groups of people your chance of being a carrier is fairly low and then you AND your husband both have to be a carrier for it for it to even be passed on to the child. My husband and I didn't feel we were high risk and didn't feel it would stop us from trying to have a child.
If I were you I would ask for more information on what conditions they are testing for and the percent likelyhood that you may be a carrier. You may read the list of conditions and realize that your aunt suffered from that or something in which case you may want to get tested. You may read the list of conditions and nationalities and think none of it applies to you.
NIPT is a different sort of genetic testing that looks at how the egg and sperm have combined and are now replicating cells and if there are anomalies.
@doctorcrime I posted a long post a few posts back about NIPT vs traditional NT scan (ultrasound plus routine blood work) that you might find helpful. The short answer is there's no easy answer to your question. Each condition has its own statistics associated with the likelihood of detection, and a lot of that is based on your ethnicity. I would speak to a genetic counselor about your specific case because it's definitely not a simple answer.
**TW**
Me: 35 | H: 40 Married Sept. 2013 DS1: Nov 11, 2016 MMC: 11/16/18 (9w6d) CP: 2/3/19 (5w3d) BFP! 8/24/19 DS2: May 10, 2020
again, with NIPT you can look at the percent of babies that have these conditions in the population and decide for yourself if this is a risk level you are comfortable with. For instance if only 1 in a million is born with a certain condition I'm totally ok not testing for it because the chances of me having it are slim, but if 1 in 10 babies have it, I might be more inclined to opt for the test.
@doctorcrime MH and I have done genetic testing because I kept having miscarriages. It was stressful, but we have two kids and we felt we owed it to them to know if we had a condition they may have to deal with. We don't, however we learned that I am a carrier for spinal muscular atrophy. I am so glad I can pass this info on to my kids, so when they are ready to have kids, they and their partners can get tested.
I don't look at genetic testing as something you do to determine whether a pregnancy should be terminated. Personally I think it's important to have as much important medical information about my child as possible so we, and our doctors, are ready for any special care that might be needed at birth. I also want to be able to plan for an unexpected medical condition and all the related care and medical treatment that may come with it, ahead of time. I do not want to be blindsided at birth and in the position of making major medical decisions with minimal understanding of the condition.
@ruby696 This is great input. I think if my insurance covered it I would have jumped right in and had every test in the book. It's unfortunate that potentially important medical decisions could hinge on cost and/or insurance coverage. There are people all over the world that don't get the medical care they want/need due to costs and this is sad.
@ruby696 I agree with you. My husband and I were against *us* having the testing done based on the fact that we wouldn't terminate a pregnancy. (My own view for my own body and not my view for anyone else's bodies. that's not my business). After a friend had a very unfortunate situation that those testings might have better prepared her for, DH and I talked about how we might consider the testing just to have all the information readily available if we needed to make adjustments to birth plans, location, etc.
@TattoosandLace that made me think of something I hadn't really considered, and that is location. My selected hospital isn't exactly equipped to handle unusual circumstances. If there was a high probability my baby would be in the NICU I'd choose to deliver in the city two hours away instead of at my local provider. hmm...
@pirateduck exactly. I hadn't thought of it either. My friend lives in Nashville and delivered in Boston due to her extraordinary circumstances.
Yes, I had a friend that knowing things were not perfect, delivered in the hospital across the street from the best children's hospital around where her infant when straight into surgery. Her little girl is just fine now, but had they not planned on this, who knows how well things would have gone.
I was on the fence about doing NIPT, but after talking to a coworker who did it for her last two pregnancies I realized that it would be beneficial to have time to do the research and prepare if my child may have something and have decided to go ahead with it. I do need pre-approval from my insurance, but it should be covered. My midwife recommends not doing it until 10 weeks at the earliest so I’m hoping to schedule for around 11 weeks, though that depends on the turnaround of the pre-approval.
Found out today I’m a carrier of the SMA gene (spinal muscular atrophy) so next we need to get husband’s blood tested and meet with the genetic counselor. They called and told me over the phone and I was so shocked, now I have a million questions, I hope they schedule an appointment soon.
@KaylaSadie I'm a carrier for SMA. We found out after doing genetic testing after several losses. Luckily, MH is not a carrier. We have two children and will probably have them tested as teenagers. If they are carriers, I want them to know before they have children, so their partners can be tested as well.
I am going in after 10 weeks for the “myriad” test. I might wait until 11 weeks just to be safe. My doctor sent the orders to the lab and just said “go between week 10&12”
An FYI for moms of multiples, since this has come up - my doctor's office does the Panorama test, and today they told me that they (a) do it for twins and (b) consider it reliable enough to do in place of an NT scan, even for twins. I did call the rep for the company, who said there are no insurance companies that currently routinely cover this test for twins, but the OOP is $249 and there's a compassionate care discount if your household earns under $100k annually.
I'm excited to be able to do NIPT! I was worried it wasn't going to be a possibility.
@shamrocandroll I just wanted to let you know that I am now in the exact same position you're in and all your research on NT vs NIPT was SO helpful! I'll be going with the NIPT.
I was told the SMA test is about $400 and I don't know what my insurance will cover of that. I want to get Maternit21 but also need to find out pricing. Otherwise I'll do serum integrated screening with no NT. I am not a CF carrier.
Does anyone have any self-pay info about Maternit21 (because obv price with insurance will vary, but I heard they often have good self-pay rates)? I know I need to call, but...
DD #1: April 2017 DD #2: May 2020 Baby #3: EDD May 2023; MC October 2022
@babyfoxden10, I was told the NIPT gave the sex of the gender. My doctor told me that it usually takes about two weeks to get results in. They said they would call with them and I could come in and pick up an envelope with the gender if I didn't want to learn in the phone. I'd check with your doctor to see if they can give you the results ahead of time if you don't want to wait-- they should have them before four weeks I would imagine.
Ok, just was at the doctor and they drew blood for NIPT today. My doctor presented it as a required test and the standard of care for someone my age (over 35). As previously posted I had been quoted a lot of $$$ from Progenity For self pay and was told insurance would only cover it if it was medically necessary, I used a specific in network lab, and I was pre-approved. Today the doctors office explained that they have a special contract with Progenity and that Progenity is out of network for everyone, but because of this contract patients cannot be billed more than $200 for the test. So my advice to you ladies is to not only talk to your insurance carrier but to your doctor’s office billing department because costs may not be what you thought/expected. For me they ended up being far less than I was originally quoted. My doctor is doing an NT scan in conjunction with this and says between the results of the two we should be able to avoid the more invasive testing.
I had the I had the same experience as @pirateduck with the cost. If we went through insurance, the NIPT which includes the Panorama would’ve cost $759 unless we had already met our deductible. We had the option of choosing to self pay and it only cost $250.
I had the NT scan on Tuesday and came back with an elevated risk. The cutoff measurement is 3.0 and baby measured 3.2. We are now waiting on results from the panorama and will then decide if doing a CVS is right for us.
@spiderlover25 I'm sorry yours came back elevated. I had that with my DD, but it wasn't because of the measurement it was because of some of the blood work that goes along with the NT. Did they tell you how "elevated" it was? Mine was like 1/191 so still a 99.5% chance everything was ok which was reassuring. I ended up doing the NIPT after that since I was considered increased risk. Hoping yours was just a false positive and then NIPT comes back clear. This is why I'm just avoiding the NT all together this time since it seems NIPT is more accurate. A question about the billing - did it get submitted to your insurance to determine it would be $759 or did you call them first? I'm just curious what the actual order of events is to get this for the best price. My OB didn't say much about it just said "oh which lab does your insurance cover, you can go do the blood draw there" but I have a high deductible plan which I haven't yet met and might not this year so I don't know if that will be the best option for me. I'm trying to decide if I need to just wait and see how it plays out with insurance or do I call insurance/Natera and check then tell them not to submit because I'd rather self pay?
@bananapanda I called my insurance and was quoted the $759. When I scheduled the appointment for the test, I asked about the cost and was told the max for self pay is $250. When we met with the genetic counselor for the actual appointment she said that we could choose self pay for $250 or submit to insurance which is usually about $750. If the submit to insurance, it would likely be covered but we would have to meet the deductible, meaning we would pay the $750 since I haven’t met it this year yet. Once it gets submitted to insurance, you pay whatever your negotiated rate would be ($759 for me). We chose not to submit to insurance so we would only owe $250.
@bananapanda call your insurance and call the billing department of your doctors office first. They are all different and complicated, but should be able to help you make the best decision. Don’t be forced into having it billed in a way that doesn’t work for you.
@bananapanda I did genetic testing prior to pregnancy with Natera. They sent me an email telling me what it would cost me if they billed insurance and what self pay was. I opted to pay the $300 for self pay. I'd call Natera. They're pretty easy to work with.
oh my effing god. I have been on the phone with cigna for 30 minutes. I still have no information as to what SMA carrier testing, serum integrated screening, or Maternit21 will cost me.
DD #1: April 2017 DD #2: May 2020 Baby #3: EDD May 2023; MC October 2022
@catem07 I’m sorry! I hate to say it but I know the joys of Cigna’s customer service all too well. I wish I could advise you myself, but every plan is different. It’s all way too complicated.
Re: Genetic Screenings and Tests - Questions and Experiences
https://www.whattoexpect.com/pregnancy/pregnancy-health/prenatal-testing-most-common-genetic-tests-during-pregnancy/
Married Sept. 2013
DS1: Nov 11, 2016
MMC: 11/16/18 (9w6d)
CP: 2/3/19 (5w3d)
BFP! 8/24/19
DS2: May 10, 2020
Married Sept. 2013
DS1: Nov 11, 2016
MMC: 11/16/18 (9w6d)
CP: 2/3/19 (5w3d)
BFP! 8/24/19
DS2: May 10, 2020
Background for those who may not be familiar with my story (TW for loss):
This go around, I'm all about as much information as possible, since I do not have the benefit of knowing what may have caused our issues. I will also be turning 35 about 2 weeks after my due date. I inquired with my OB about NIPT and was told I would need to choose between NIPT and an NT scan because they don't do both. I was frustrated because I was willing to pay out of pocket for the NIPT and didn't understand why I couldn't also do the NT scan.
My visit this morning was wonderful. She listened to my concerns and anxieties (and I even choked up a little bit, which I wasn't expecting), and made sure I was able to say everything on my mind and ask any questions before she started to explain options to me. She ran me through a variety of scenarios regarding NT, NIPT, CVS, and amnio.
She explained to me that the main difference between an NT scan and a standard scan isn't really visible to the patient, and therefore wouldn't necessarily feel different, but that for an NT scan, they use technicians who are specifically trained in measuring the thickness of the fluid buildup on the back of the baby's neck. This is a very precise measurement, and the tech is highly trained and certified to perform it. This measurement, along with some 1st trimester blood work, gives you a range of risk for conditions such as down syndrome and trisomy 18. If you come back with an elevated risk flag from your scan, then you would forego doing 1st trimester blood work and go straight to genetics to get the Harmony test. The reason they do not like to do both tests in conjunction is because it's possible for the NT scan to come back elevated and the Harmony to come back low risk, and they would always default to the Harmony risk level, but then you have two risk factor numbers and unnecessary anxiety for the expectant mother. So, they prefer to skip over the NT scan and go for the more precise Harmony screening for higher risk pregnancies to avoid the unnecessary redundant and possibly conflicting information. In the case of an elevated risk coming from the Harmony test, we would then discuss the options regarding invasive CVS vs. amnio testing, and the risks associated with them (namely a slight increase in miscarriage risk).
She asked me what I would like to do, and I told her I would like to take the most accurate non-invasive screening test possible, but that I did not want to do it at the sacrifice of getting a ~12 week scan and having to wait until 18+ weeks to know whether or not we may have missed something that could have been caught at a 12 week scan. I then explained to her that one of the reasons I was anxious was because I didn't want to go 10 weeks (between my 8 week viability scan and my 18 week anatomy scan) without receiving some confirmation that everything still looks okay, the baby still has a heartbeat, and that my SCH has resolved. I explained to her that while my OB doesn't have me on pelvic rest because of my SCH, I've been mostly doing one anyway out of an abundance of caution and not wanting to increase my risk of spotting or bleeding, and raise my anxiety any further. At that point she asked me if I would be agreeable to a Harmony test in conjunction with a standard, non-NT scan to check for those sorts of things prior to my anatomy scan. I asked if there was anything that could potentially be missed by doing Harmony and a scan but not the NT measurement, and she told me there wasn't, really.
We then talked about other genetic factors that could come into play (such as Tay-Sachs, since MH is French Canadian) and tests that could be run to cover those bases. We landed on the plan that I would have the Harmony Test and a standard 12 week ultrasound, with an added genetic screening for Tay-Sachs carrier status. I've already had carrier screening for cystic fibrosis and spinal muscular atrophy. Oh, and she looked into my insurance and said there's no reason she could see why they wouldn't cover the Harmony test, so yay to that!
Whew! That was a lot. Overall, I'm feeling really positive after my visit today, and feeling good about our plan moving forward. I feel like she really went above and beyond to make sure I felt good about the plan, and she was really just so wonderful. I'm also finally letting myself get a little bit excited!
ETA correction
Married Sept. 2013
DS1: Nov 11, 2016
MMC: 11/16/18 (9w6d)
CP: 2/3/19 (5w3d)
BFP! 8/24/19
DS2: May 10, 2020
@shamrocandroll So wonderful to hear! So happy that you have some clarity and a plan!
Diagnosed with PCOS & Hashimoto's
another thing that isn't super clear to me is, we did PGS testing on our embryos before transferring them. I wonder if there's a case where even though they were rated as normal, something was missed or just not screened for.
We opted not to do genetic carrier screening. They test for a bunch of different things and depending on your heritage determines if you are more at risk of certain things as they stem from certain parts of the world genetically. If you are not from one of these groups of people your chance of being a carrier is fairly low and then you AND your husband both have to be a carrier for it for it to even be passed on to the child. My husband and I didn't feel we were high risk and didn't feel it would stop us from trying to have a child.
If I were you I would ask for more information on what conditions they are testing for and the percent likelyhood that you may be a carrier. You may read the list of conditions and realize that your aunt suffered from that or something in which case you may want to get tested. You may read the list of conditions and nationalities and think none of it applies to you.
NIPT is a different sort of genetic testing that looks at how the egg and sperm have combined and are now replicating cells and if there are anomalies.
Married Sept. 2013
DS1: Nov 11, 2016
MMC: 11/16/18 (9w6d)
CP: 2/3/19 (5w3d)
BFP! 8/24/19
DS2: May 10, 2020
I don't look at genetic testing as something you do to determine whether a pregnancy should be terminated. Personally I think it's important to have as much important medical information about my child as possible so we, and our doctors, are ready for any special care that might be needed at birth. I also want to be able to plan for an unexpected medical condition and all the related care and medical treatment that may come with it, ahead of time. I do not want to be blindsided at birth and in the position of making major medical decisions with minimal understanding of the condition.
I'm excited to be able to do NIPT! I was worried it wasn't going to be a possibility.
Married Sept. 2013
DS1: Nov 11, 2016
MMC: 11/16/18 (9w6d)
CP: 2/3/19 (5w3d)
BFP! 8/24/19
DS2: May 10, 2020
Does anyone have any self-pay info about Maternit21 (because obv price with insurance will vary, but I heard they often have good self-pay rates)? I know I need to call, but...
DD #2: May 2020
Baby #3: EDD May 2023; MC October 2022
I was quoted $595 out of pocket for progenity. I was quoted $698 for MaterniT21
DD2 born 9/10/17
ETA: pregnancy brain forgot half my thoughts
DD2 born 9/10/17
- BFP: 3/10/16 — Baby Girl born 11/20/16
TTC#2 April 2019DD #2: May 2020
Baby #3: EDD May 2023; MC October 2022