Genetic Counseling - Opinions?

Kaessi · May 2016

I apologize if this has been posted previously & I missed it, but...do you guys have any opinions/advice/etc. about this? My OB referred me to a specialist for a Level II scan (which makes me nervous), but assured me it's just because I'm AMA and have had a previous cervical surgery, not because anything abnormal is going on. However, the specialist "highly recommends" genetic counseling prior to the US. I'm assuming this is just to talk about family history & such and determine if there are other tests that we might be interested in? Surprisingly, I could get in for an appt 2 weeks earlier for my scan if I set up the genetic counseling appt prior to the scan...which makes no sense and makes me wonder if it's really just a strategy to get us to spend more money. Has anyone had this done before? Recommend or no?

LMNOBaby · May 2016

I was referred to Maternal Fetal Medicine AND Genetic Counseling because of AMA and my hypothyroidism. Being a first time mom I went along with it and the genetic counseling was part of my cell-free DNA test appointment at MFM. Basically, they talked to me about all the potential risks of having a baby at my age (34, delivering at 35), and the types of tests available to check for extra chromosomes and other conditions. Basically, thanks to Dr. Google, I knew pretty much everything the doctor had to tell me. He did run through my medical history and some of my family's, but that was it. I didn't get much out of it, except when he threw in a sidenote that REALLY our advanced maternal age doesn't become too risky until after 40... which eased my worries a bit.

VERY strange that you could get in so much earlier for the scan if you schedule genetic counseling first... I don't think I got charged more because of the counseling that was part of the appointment - but it all went through my insurance. If your doctor said the second scan isn't something to worry about, I'm curious as to what she thinks you need to look for with the genetic counseling? When we had the cell-free DNA test, it was left that more discussion would be had if those results came back inconclusive or alerting a concern... Any way to put the counseling on hold until after the scan? See if something pops up as cause for concern?

kelliott09 · May 2016

As an AMA mom, I HAD to go to the genetic counseling appt before they would do my nipt testing. She basically just went over all of the types of testing they offer, what they screen for, what the risks of the tests are and what my risks are for any abnormalities and asked what I wanted to do. Did you not have any NIPT tests?

kathleenkat · May 2016

They tell you to do the genetic counseling first, so if there are any concerns, they can look for them specifically in the scan.

westcoastfoodie · May 2016

I had to do genetic counseling last pregnancy before an amnio (I was not previously at risk for any disorders, but needed the amnio because my blood results showed spinal fluid - I forget the technical term), but I didn't need genetic counseling this time. It was pretty quick and the counselor just went through our entire family tree and asked about any and every disorder and illness, then in for the scan. As previously mentioned, it helps them keep an eye out for any specific concerns.

blaf322 · May 2016

I have had genetic counseling because of a disease I'm a carrier for. It was required for the PGD/PGS we did. That said, based on my experience, I agree with @LMNOBaby.... I think you're going to know most of it already. My conversation was more in depth because of the issues I knew we had, but even then, I had done such extensive research that I came to the table with a great deal of knowledge and the counseling was more obligatory.
I think an important question to ask yourself is, if the baby was diagnosed with something early on, would it change how you handle the pregnancy? If not, then it sounds like it may be an extra, unnecessary, step that is going to mean more OOP expenses.

Again, I'm not AMA so I'm not as versed in this, but that would be my thought process if I were.

jbal918 · May 2016

I had a level 2 scan bc of my kidney disease as well as genetic counseling with the RE before we even got pregnant. I also was now referred to maternal fetal medicine for a high risk consult even though everything kidney wise is well just to be safe. They asked for genetic counseling but it's already done. I think they do it as a caution to look for things. They looked specifically at the baby's kidneys more in depth because of me. I was stressed when I heard level 2 at the hosital, especially since my dr usually does them in office but it's better to see everything at a level 2 and get a better piece of mind.

Quick question - What is AMA? I'm not sure. Sorry!

Pupatella · May 2016

It was strongly recommended for me to go through genetic counseling because of my Jewish ancestry. I'm not AMA, but decided to go through the genetic testing. I found it extremely thorough and helpful.

NoraAurora · May 2016

@MrsB627 - AMA= advanced maternal age (i.e. Over 35).

We had genetic counseling with our first baby, because he had severe congenital anomalies. We mostly discussed family histories and lineage, and they determined that H and I probably aren't related (gee thanks).

I say go, it's an interesting discussion if nothing else. You may even learn something.

westcoastfoodie · May 2016

Pupatella said:

It was strongly recommended for me to go through genetic counseling because of my Jewish ancestry. I'm not AMA, but decided to go through the genetic testing. I found it extremely thorough and helpful.

Yeah I found it to be pretty helpful too. Our doctor's concern was spina bifida and we had made a decision prior to the counseling that if our baby had it, it would not change any decisions or the course of the pregnancy. We still went through with the counseling because it would help pinpoint any issues within the scan and amnio. Insurance paid for it, and we just wanted all of the information that we could get.

Kaessi · May 2016

Thanks for all the advice/input! I think I'll keep the appt & just see what they have to say. We have not had any previous tests done, except the MaterniT21, in which everything came back normal. I'm not particularly wanting additional tests, but I'll see what they say.

von1976 · May 2016

Hi! We were referred to a genetic counselor at a MFM practice for genetic counseling for the 12-week NT scan, but probably also because we are AMA, and specifically because we asked about cell-free DNA testing for aneuploidy and trisomies. The genetic counselor basically went over our family tree, asked about health problems or defects, and recommended what tests we might want to cover. We did the first trimester screening (even though it has an incredibly high rate of false positives--something like 20%, I want to say), and the cell-free test (99% accuracy). Basically they give the same information, but we wanted all the information we could get. We decided we wouldn't freak out if the first tri screen came back positive, since we really were relying on the DNA test to tell us the result.

If you already had the MaterniT21 done (which is a cell-free DNA test), then I'm not sure why you'd need additional screening or testing. There's really not much more for them to tell you unless you're going for a Quad screen (done in the 2nd trimester), but that was a blood test done at my regular OB's office. That one tested for neural tube defects like spina bifida. However, it is possible that they want them to do an anomaly scan (also called anatomy scan), usually done at 18-20 weeks. That just makes sure all the bones are present, the heart valves, etc are all there. I've heard sometimes those are ONLY done at MFM offices, though my regular OB's office did mine.

UponAStar16 · May 2016

I had a brief genetic counseling appt before the NT scan and had to go for a more thorough one before I went back for the optional testing. The first was useless and clearly a technicality, not even discussing any info specific to me and just about the 3 trisomies the blood test and NT could detect, but the full appt was semi-useful in terms of discussing family history and chances of the baby developing certain health issues, but they were required so it wasn't a decision I had to make. If you are going for the ultrasound I'd say go for the genetic counseling especially if it's covered by insurance. Basically it should help you understand the issues that the ultrasound could detect so you can make informed decisions.

minnemiska · May 2016

I'm AMA (39) and have a thyroid condition. I did the NIPT and have a few extra labs to monitor my thyroid, but because everything looks normal my doctor has otherwise not treated me any differently than if I were 10 years younger. I had been given information on genetic testing at a regular check up back when I was talking about starting a family soon, but my doctor hasn't pushed any testing on me simply because I'm older. If someone has had a difficult time conceiving or has a family history of concern, I can see it being more recommended, but just because of age even if there are no other risk factors? Seems unnecessary and not supported by more recent data on older women having children. Unless the results of the testing would change how you view the pregnancy, I'd frankly skip it.

NoraAurora · May 2016

minnemiska said:

I'm AMA (39) and have a thyroid condition. I did the NIPT and have a few extra labs to monitor my thyroid, but because everything looks normal my doctor has otherwise not treated me any differently than if I were 10 years younger. I had been given information on genetic testing at a regular check up back when I was talking about starting a family soon, but my doctor hasn't pushed any testing on me simply because I'm older. If someone has had a difficult time conceiving or has a family history of concern, I can see it being more recommended, but just because of age even if there are no other risk factors? Seems unnecessary and not supported by more recent data on older women having children. Unless the results of the testing would change how you view the pregnancy, I'd frankly skip it.

Can't argue with evidence based practice

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