Anyone decline the maternity 21 and/or genetic counseling?

I am now of "advanced maternal age". I am going to the high risk OB because my first pregnancy was high risk. When they called to confirm, they said I will need the maternity 21 in addition to the ultra screen and then I have to schedule an appointment to discuss the results with a genetic counselor.

My first child is perfectly fine.
All of DH's and my genetic screens are normal. I know that does not look at chromosomes. If the ultra screen results are fine, which is 90% accurate, do I really need to take the additional test which is 99% accurate? To me, there is no difference between being 90% accurate and 99% accurate. Neither are 100% accurate which means there is a 50% chance the results could be wrong either way. Is there any real reason it would be negligent of me to defer the maternity 21?

Additionally, I really, really don't have the time to be shlepping to all of these doctors appointments, nevermind a genetic counselor. I feel like they are simply meant to freak you out, dwell on the margin of error in the testing and basically just serve as another billing opportunity. There is nothing definitive about what they are saying unless something definite comes up on your testing, which again, would probably show up on the regular ultra screen. Is there any real reason it would be negligent to defer the genetic counseling?

I also don't see why I need to see a genetic counselor to tell me the results of my blood work. Is it unrealistic for me to expect that if there is bad news, someone with an "M.D." after their name should call and break it to me?

To me, all of this is black and white. Its either good news or bad news (while of course acknowledging the margin of error - don't want to forget about that!). I'm not really sure why I need all of this extra testing and counseling. It just seems excessive to me.

Am I missing something? I'm not being facetious. I just want to know if it would be a bad thing if I just skipped the testing and the genetic counselor and why. Or, has anyone else skipped it?

Re: Anyone decline the maternity 21 and/or genetic counseling?

I'm a little confused - who is telling you that you'd need to see a genetic counselor to go over blood test results? I got mine from my ob/gyn. I think they recommend you see a counselor only if something comes up as an issue with the results. Or did I misunderstand what you're saying??

Anyone decline the maternity 21 and/or genetic counseling?

I declined meeting with the genetic counselor for this pregnancy. We went with our first child, and while the results of the bloodwork were fine and didnt show anything, she gave us a whole laundry list of all the possible things that could be wrong with our child (including telling us that DD could be predisposed to getting breast cancer since my Mother had breast cancer). I found it to be a waste of time and it only gave us unnecessary worry. Also and obviously this is an extremely personal decision, but I know that I would never terminate my pregnancy at this point, no matter what they told us might possibly be wrong. So if you have the same thinking, and are having an otherwise healthy pregnancy with no abnormal results in prior testing, I'd say skip it.

Re: Anyone decline the maternity 21 and/or genetic counseling?

Re: Anyone decline the maternity 21 and/or genetic counseling?

I had the test done, but the meeting with the genetics counselor was about 10 minutes before the blood test, just to explain and give me options. She called a couple of weeks later to give me the results over the phone.

For me, it was 1 appt and 1 copay to find out with 99% accuracy that the baby is chromosomally normal. I also got these test results back before my NT scan so it was worth it to me.

ETA: But you can most certainly decline it if you don't feel like you want the test. Nothing is mandatory.

Message edited 12/17/2014 3:54:13 PM.

Re: Anyone decline the maternity 21 and/or genetic counseling?

Re: Anyone decline the maternity 21 and/or genetic counseling?

Theres really no negative to having it done. Its a simple blood test. It gives you the percentage chances of abnormalities. The genetic counselor then takes the results from the NT scan, the 16 week scan and the blood test and is able to tell you a lot of details about the chances of your child having chromosomal abnormalities. I am told it is a lot more accurate then an NT scan but not as accurate as a amnio.

The blood test literally takes a second. I did it when I went in to do the 16 week scan, so it was one appointment. And if you are advanced maternal age then Insurance covers it.

I met with the genetic counselor twice, once after the NT scan and then again after the blood test and 16 week scan. Each time I met with her for about 15/20 minutes and she was able to explain to me what everything means.

She also went through my history/family and DH's the first time we met to see if there is anything else we should be concerned about. Like my uncle died as a child from a genetic disorder, but as I am only half Italian and DH is not Italian there is no chance of my having to worry about that.

I found it all very reassuring. But my numbers were very positive.

But it was never something I was told I HAD to do. If you don't want to do it, don't.

But if you want to know the gender you may as well as it is a good way to find out.

Anyone decline the maternity 21 and/or genetic counseling?

my doctor administered the Materniti21 test and called me with results. Everything came back normal. I would be annoyed and probably not go to a genetic counselor.
to me, I would only go to a genetic counselor if something came back abnormal, otherwise, I am not wasting my time!

Anyone decline the maternity 21 and/or genetic counseling?

You do not need the ultra screen and the materniti21 test- generally you do one or the other. They are both screening tests that assess the odds that your child will have one of the disorders the tests look for- meeting with the genetic counselor is a common practice to help you determine what testing is best for you. Most genetic counselors are NOT physicians.
You have the right to refuse any testing you do not want--it is up to you to determine what is best for you.

Re: Anyone decline the maternity 21 and/or genetic counseling?

I went yesterday. They recommended I do the ultra screen first and if that has abnormality, then do more advanced studies. They did want me to see the genetic counselor, which I deferred unless there is abnormality. They really frowned upon that. I requested a teleconference with the counselor and they refused to accommodate that so I declined. Hopefully all is fine and that will be the end of it.

Re: Anyone decline the maternity 21 and/or genetic counseling?

Posted by FirstMate

I went yesterday. They recommended I do the ultra screen first and if that has abnormality, then do more advanced studies. They did want me to see the genetic counselor, which I deferred unless there is abnormality. They really frowned upon that. I requested a teleconference with the counselor and they refused to accommodate that so I declined. Hopefully all is fine and that will be the end of it.

Anyone decline the maternity 21 and/or genetic counseling?

I would not do the ultra screen and the Matrni21. Pick one and go from there. Both I beleice just give you odds. I skipped the ultra screen. They didn't have the other when I had ds. I figured I didn't need odds when a big portion of the formula they use is age. Age was going to give be horrible odds from the get go. I went straight to the amnio. I think I would have done the CVS but my dr didn't do them.

Re: Anyone decline the maternity 21 and/or genetic counseling?

What's the CVS?

Its so strange how there is no standard with this stuff. It seems each doctor does what they like best. In my case, my regular OB and my high risk said do the ultra screen and if it comes back abnormal, well go from there. My friend did maternity21 and then the ultra screen because she had abnormality on the blood work that the sono of the ultra screen could figure out so she went backwards. Then you ladies seem to do one or the other. I'm a malpractice attorney and a lot of what we focus on is the standard of care so it's interesting to see that there really is no standard in this instance. Maybe because the maternity 21 is still so new.

Alli, my friend had the problem with the age/blood work combo. If she was under 35, her bloodworm was fine but since she was 38, her chances of downs were 1/61 so she did the amnio. It was fine but very nerve wracking in the interim. That's why I am so anti-genetic counselor. I don't want information that's just going to cause paranoia and panic.

I just pray it all comes back fine and that will be the end of it.

Re: Anyone decline the maternity 21 and/or genetic counseling?

I did the NT scan and both the Verifi and Counsyl testing. I'm 39 and have had 4 losses in the past 3 years. My dr wanted to cover all bases. Regardless, I feel so much better with the Verifi done bc the NT scan only gave chances of Downs/Trisomies. The Verifi is a more definitive test.

Re: Anyone decline the maternity 21 and/or genetic counseling?

Anyone decline the maternity 21 and/or genetic counseling?

CVS is chorionic villus sampling- this is a good explaination--http://www.mayoclinic.org/tests-procedures/chorionic-villus-sampling/basics/definition/prc-20013566

As far as standard of care goes it seems that with all the options there is no standard which is why many OB's refer patients to a genetic counselor to discuss the different testing options. The NT scan and the ultra screen are the first trimester tests that have been around for many years. The materniti21 test (and the same type of test under different names) are relatively new BUT they are still just screening tests. They are NOT diagnostic but give you an odds ratio- just because you are older this does not mean your odds will automatically be "bad". My ultra screen results were the same as the numbers expected in a 20 year old patient. In my experience the genetic counselor will advise you to do one screenings test then proceed to a diagnostic test if you choose IF the odds of a genetic defect are higher then the risk of miscarriage due to the diagnostic test (CVS or amino). If you decide on a diagnostic test CVS can be done earlier but there is a chance that you may still need the amino for more conclusive results.
I think you may want to reconsider meeting with the genetic counselor to discuss the different tests. The meeting takes about 20 minutes.

Re: Anyone decline the maternity 21 and/or genetic counseling?

If the counseling meeting was only 20 minutes I would consider it but they told me to plan on a minimum of an hour. That's my real issue when it comes down to it. They will not accommodate a telephone conference and they will not just give me the gist over the phone. They want a full consult in the middle of my work day because that's when they work. I just don't have the time. I see 2 different OBs regularly and it's a huge chunk of time. I sat in my OB office for 2 1/2 hours past my appointment time in the middle of my work day because of emergencies. What I thought I could swing during a lunch hour did not happen. And, while that was extreme, it happens every time I go. I'm sure you all can identify. I just don't see why this can't be done over the phone. It obviously can because some of you have had it that way. It's obnoxious.

I'll wait and see what the results are and take it from there.

Re: Anyone decline the maternity 21 and/or genetic counseling?

I'm not of that age so I didn't need this although one day I'm sure they'll suggest it and I'm definitely declining it. I did decline one or two things they wanted me to do when I was pregnant with DS.

I felt, then, that I'm having my child no matter what and regardless of anything they say or "find". So, for me, it's not going to serve any purpose to have the tests done... and will lead to a lot of worries.

Anyone decline the maternity 21 and/or genetic counseling?

NO testing is required. You don't have to have a singel test when you are PG.,......so pick and choose what works for you.

The CVS is (results wise) similar to an amnio. The actual tests are very different and are done at different times of the PG but will give you absolutes rather than odds.

Re: Anyone decline the maternity 21 and/or genetic counseling?

I'm so glad you asked this! I too, am of 'advanced maternal age'. I'm 36. Yikes. Anyway, I did one part but I didn't go for the NIPS part. Debating making that appointment.

Re: Anyone decline the maternity 21 and/or genetic counseling?

I was 36 when I had DS and did nothing in the way of genetic testing. We never really discussed it more than my OB simply mentioning it as an option.

This time I'll be 40 when I deliver (hopefully!) - and after 3 losses (one of which we know was a genetic abnormality), I've opted for cvs. I had my counseling session today and found it really interesting. It lasted a max of 40 minutes, and would have been quicker if I wasn't asking as many questions as I was (primarily about the cvs test itself).

I did waive some of the tests that are available - because I don't need risk info on "possible genetic mutations" for which they have no info.

That said, I do want the info that cvs will give me, and I didn't want to wait another month for amnio.

It's a totally personal decision. As my (high risk) OB said - she has some 22 year olds with no risks opt for genetic testing, and she has some 45 year olds waive any testing at all. It's all about what info you're looking for, and what you'd do with that info.

Good luck w your decision. My experience with the counseling was helpful and not the least bit "pressuring".