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acpruchnik · August 2014

I'm meeting with a high risk doc on Tuesday afternoon and have never met with one before. I was high risk with DS (bicornuate uterus, tilted, all that good stuff) but my doc just threw me in bed the last 4 months and put me on meds to stop my back labor. I have a completely different doc this time and have already had some issues with this LO so she sent out the referral. The only thing I really know about it is that they're going to do an ultrasound, which I'm not going to argue with! Anyone else seen one? I have no idea what to expect, none of the professionals I'm dealing with have explained anything, and I'm having to go alone so I'm freaked out.. Like a lot.

Also, they're doing a harmony test. Not sure which of the 4 they're going to do and I've never had one done so I don't really know what to expect with that one, either. I know it's blood work and it takes around 2 weeks to get results, which is going to drive me batty in its own, but is there anything else I should be aware of? My old doc never recommended anything like that with DS and I'm assuming since I was in my early 20's but since my son has a few things going on this doc has recommended this testing. I'm not going to use any bad results to terminate or anything like that, but we want to be prepared if our LO is going to need extra services or assistance once they're born.

Again, sorry if there's a thread with either or both of these and I looked through the first few pages of posts before I ended up posting this without finding anything. I'm trying to NOT be the new kid that repeats posts lol

Please and thanks in advance!

Neesey · August 2014

I see an MFM too. She does my ultrasounds and measurements and coordinates with my ob. It is a team approach. I alternate doctors about every two weeks.
Sounds like you are having an NT scan too. It can help to determine your risk level for trisomies and downs. A test like harmony or maternT21 are simple blood tests to help determine any abnormalities. Some take longer than others to return results.
Hope that helps to answer some of your questions. I'm by no means an expert but there's lots if info here once you know what to look for.

HerHighness · August 2014

The cfdna tests (harmony, mat21 and panorama) are fairly new. I'm not sure exactly what year they started using them but my guess is when you had your son they weren't being used at all.

I had the harmony test a few weeks ago. I went to the lab and they drew 4 vials of blood and mailed them to the genetic lab. The MFM nurse called me back with the results in 2 weeks. Since i had a history of trisomy and im considered AMA the MFM dr decided to do that test after my NT instead of the standard blood test. They are a lot more accurate in diagnosing trisomy disorders.

acpruchnik · August 2014

@neesey That actually does help. All they really told me at my doc's office was "we've sent out a referral for a high risk doctor and they'll be calling you to schedule your consult this week" and all I heard was "high risk doctor" before I started freaking out. I don't know if they're doing the NT since I'm already 13 weeks. I just assumed that's why they suggested the bloodwork since it covers the same thing as the NT does. Can they do one this late? I thought the cut off for the NT was 12 weeks but I'm happy to let them do it if it's not.

acpruchnik · August 2014

@herhighness My son will be 5 in April so that's my guess, too. My doc with him did all of my scans in his office, too, and I think I had an NT but I can't remember for sure. This is all so new to me! I'm glad to hear the bloodwork is so accurate, also. The waiting is going to suck, but I'd rather go crazy for 2 weeks than not know what's going on!

HailsMom · August 2014

I think 13 weeks and 5 days might be the latest they can get accurate measurements for the 1st trimester screen, but I could be mis remembering what I was told. Either way, chances are they might just be wanting to do an ultrasound to get a good baseline of what is going on. A lot of specialists like to run their own scans and tests so they are done the way they want them done. I had the panorama test done (like harmony) and they drew 4 vials of blood but according to what the tech at quest told me, they usually just take 2, my veins just didnt want to cooperate and she had a hard time getting them to fill enough.

Try not to stress to much, look at it as you are getting more information in order to be better prepared!

Good luck with everything!

jaztastic · August 2014

Neesey said:

I see an MFM too. She does my ultrasounds and measurements and coordinates with my ob. It is a team approach. I alternate doctors about every two weeks. Sounds like you are having an NT scan too. It can help to determine your risk level for trisomies and downs. A test like harmony or maternT21 are simple blood tests to help determine any abnormalities. Some take longer than others to return results. Hope that helps to answer some of your questions. I'm by no means an expert but there's lots if info here once you know what to look for.

Same with me. My MFM and OB offices are partners. That being said, don't be afraid to ask either your OB or specialist questions. They both maybe assuming the testing and/or results are being discussed at the other office. I repeat questions even when I know the answers, just to make sure the answers are consistant and that I fully understand what's going on.

cannolioh · August 2014

I see a MFM as well as an OB. The ultrasound is probably to take baseline measurements of your cervix and uterus. If you experienced early preterm labor last pregnancy, you should ask if you are a candidate for progesterone, it can be given orally or by injection starting around 16 weeks.

I can't speak to the CF DNA test as I opted out of doing it at this time.

Neesey · August 2014

I think my cut off for the NT scan was 14 weeks.

acpruchnik · August 2014

Thank you so much ladies! It really means a lot that you've taken the time out of your days to respond to me about this

CogDis · August 2014

Is MFM, "maternal fetal medicine"? It is common practise under the health board in the city I'm in for all women - even low risk - to be offered an ultrasound and N/T testing with a blood test and genetic counselling (depending on the results of the N/T scan) in every pregnancy at the MFM clinic. So, if your health system is like ours that aspect that wasn't explained to you might not be due to you being high risk.

Healthcare for pregnancy is a bit different here than in some states. Only women who are high risk get an OB, with the odd exception. Most are followed by General Practitioners (regular MDs, usually with a specialization in family medicine) or midwives (and midwives don't have to have nursing training here; midwifery is a four year degree program separate from a nursing degree). So, at the MFM clinic we'd usually only see anyone other than a nurse practitioner only if the results were positive for something. So maybe MFM means something entirely different?

The newer tests, like harmony etc. Are offered on an out of pocket payment option for some (but not based on risk, as far as I know. E.g. I was offered that test and I'm considered low risk). So maybe that is an optional test for you, too? Is your condition that makes you high risk associated with higher chances of genetic problems? That might help you figure that out.

I was told the n/t cut off was 13 weeks and 4 or 5 days. Also, I know the statistical model used to generate risk likelihoods fir the trisomonies is most commonly run using data from BOTH the blood tests and the N/T scan (hence the common name "combined screening", it combines both).

Sorry I don't know anything else. Please try to remember in the chaos to demand they explain things to you, next time; it isn't right that they didn't!

Sorry you're high risk but I hope thus turns out to be a boringly un-eventful pregnancy and birth for you! :-)

acpruchnik · August 2014

@cogdis I have to see the MFM because I have uterus abnormalities that cause them to flag me high risk in general until at least my 3rd trimester. Also have multiple losses (this is my 8th pregnancy, 3rd since January, and I have one living child that's 4) and this pregnancy has been difficult already. Since I've been flagged, my insurance is covering the bloodwork and the MFM but otherwise I'd be looking at out of pocket expenses.

I'm not sure about other offices in my state (I'm in AZ), but my doc only referred me out since I have so many complications and said they want to try to avoid my preterm labor as long as possible. I don't even know if the practice I go to has a midwife! I know there are practices that have them, a girlfriend of mine used one and her baby is a month old now, but I've always had an OB. My uterus issues were discovered when I was 15 and I had the same doc until after my son was born but he retired when I was living in Michigan so the only time I've seen a doc for girlie things was due to pregnancy or an issue. My PCP won't even see me for a cold while I'm pregnant, though, so I'm not sure what is typical practice for that either.

My son also has Autism and Sensory Integration Disorder and I have a 2nd cousin that had Down Syndrome so I'm thinking between that and me being closer to 30 this time around is why they're recommending the testing, regardless of my other issues.

I'm definitely going to be asking a lot of questions Tuesday and I don't know why I haven't pushed already. I'm normally that patient with a million questions at every visit! I know part of me is terrified about this baby but I need to get out of that funk and I'm hoping this MFM will help me do that and the rest of this pregnancy CAN be boringly uneventful!

acpruchnik · August 2014

OK so an update!

I went to the appt today and it turned out to be a consult.

The Materna21 was pretty easy and she only needed 2 vials. The nurse that did it ended up being the old PA from my original doc and I loved her already! Small, very happy world and start to my day! They told me 7-10 days for results so now we twitch!

Tech that did the ultrasound ended up doing an NT scan anyway, even though my insurance is trying to not cover it (she said the scan was the same, she just wouldn't be sending it out unless I told the doc to go ahead and do it) and everything looked the same to me today as it did with my son so I'm hoping for good news from the M21. It was amazing getting to watch my little stinker wiggle and dance for an entire hour! It was cool, too, cos there was a tech from GE there that was training the techs how to use different features on the new machine so I got to see all sorts of cool stuff! I was happy to be a guinea pig!

Doc was really nice and he answered the umpteen million questions I came up with. He was so patient with me and never once made me feel like I was a chart or inconveniencing him in the slightest bit! He's gonna start watching me closer between 16-24 weeks to make sure my cervix isn't being cranky and he's going to send the results from today to my OB to see where she wants to go next with my care.

The last and even best part of my appt??? The techs both looked at my ultrasound, both agreed it was the same thing without a doubt, I'm positive I saw it too, and they double checked with a 4D scan annnnnnnnd......... *insert drum roll here*

IT'S A BOY!!!!!

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