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prenatal genetic screening - which, if any, tests are you considering? - Page 2

post #21 of 49

ah, understood. I'm still not sure and I kind of feel weird about even making a decision to know right now.  I think if something shows up at the next U/S then I will consider.  I know that I would abort for something other than Downs that could limit life in such a way that it would change the dynamic of our entire family.  I'm not sure how my husband would feel about it though.  We don't always agree on these types of things.

post #22 of 49

i am going to have testing done and depending on results, i will get further testing to get definitive answers. my SO and i have decided that we would terminate should the results show something life-altering. 

 

i completely respect those who choose different path, but after a lot of thought we know this is what is best for our situation. hopefully it wont come to making that call at all, obviously!

 

i turned 32 on sunday, so while my risk isn't sky-high, it's still a mild concern. my next appointment is on monday and i'll be inquiring about my options then.

post #23 of 49
Quote:
Originally Posted by Adaline'sMama View Post

yep. And I totally agree. Downs I could deal with, but the chances of a child surviving are so low.

I totally wrote this wrong. What it was supposed to say was that I could deal with Downs, but with Trisomy 13 and 18 the chances of survival are very low once they are outside the womb.
post #24 of 49
I was 36 when my daughter was born and opted for amnio. I'm 38 now and will almost certainly do CVS in two weeks to have results sooner.

I'm not comfortable with the screens. Odds are not enough for me to comfortable, since the baby can have genetic issues with odds of 1:10, 1:100p, even 1:1,000,000. We both prefer to know. The risk of complications when the procedure is performed by a skilled practitioner are within my comfort zone. I will absolutely still worry for a few days after, but it's worth the risk to me to have definite answers.
post #25 of 49

I go in for the sequential testing/NTS next week (the 17th).  I've never had this test done before, but since Evan was born with congenital heart defects that were not diagnosed until 11 months, I want to be a little more prepared this time.  We will also be doing the level II ultrasound and a fetal echo in the 2nd trimester.  Mostly for peace of mind, and so I can take a deep breathe.  What I am most anxiously waiting for are the results of Evan's genetic testing, which won't be ready until the fall, to see if what killed him was something genetic or not.  If it was, we will go from there with testing on all of our other children, including the new baby.

post #26 of 49

I am still  not sure if I will be doing any genetic testing, but I am definitely getting more than the 20wk us.  My youngest is 14mo and was born with a cleft lip and palate.  I found out last time with my 20wk us, and it was so hard.  First I was in dinial and figured everything would be fine, then the depression hit.  It took me a long time to come out of that.  but the reason i liked knowing the best was so that I could prepare for everything after he was born.  There are so many feeding issues and weight gain problems with these babies.  Found out I wouldn't be able to breast feed, so purchased a breast pump, had to buy special needs bottles, and we were able to meet with our plastic surgeon who specializes with clefie kids and found out about all the surgeries he would have to go through.  The first one would be right after he turned 1mo old!  So this time we are doing a few more us to be able to see if this baby will have a cleft also.

 

One thing that does scare me is that there are about 100 syndromes that go along with clefts.  Thankfully he hasn't shown any signs yet, but he does have low muscle tone...he still hasn't started crawling at 14mo.  So there is always the thought in the back of my mind.

post #27 of 49

This is the best thread ever! First pregnancy I did all the blood testing, GD and US. Second & third I declined everything, but u/s this one I am leaning towards the bloodtesting screens & u/s. Off to do more research and see what my insurance covers.

post #28 of 49

I would like to add that the MaterniT21 is meant for those at increased risk due to advanced maternal age or previous history of chromosome issues.  That said, my blood draw is scheduled for Aug 2nd - I will be the first patient at my provider's office to have it done, and they are very excited to use me as a guinea pig. When I first inquired about it, I was told that the company reps were coming in to do a presentation in just a week or so and then they'd know more.  I should see if they will waive the office charges for my appointment since I'm helping them out.  lol

post #29 of 49
Quote:
Originally Posted by AKChix0r View Post

I would like to add that the MaterniT21 is meant for those at increased risk due to advanced maternal age or previous history of chromosome issues.  That said, my blood draw is scheduled for Aug 2nd - I will be the first patient at my provider's office to have it done, and they are very excited to use me as a guinea pig. When I first inquired about it, I was told that the company reps were coming in to do a presentation in just a week or so and then they'd know more.  I should see if they will waive the office charges for my appointment since I'm helping them out.  lol

I totally qualify under AMA...hee hee

post #30 of 49

i get my first round of screens on thursday. i saw my regular doc today and he said he cheated and checked out the marker areas and that everything looks 100% normal, but a hospital tech has to officially make that call....so i'm feeling good!

post #31 of 49

No testing. :)
 

post #32 of 49

My insurance won't cover the MaterniT21 test. They consider it to be an "experimental" test. I do not have any family history of chromosomal abnormalities, nor does my DH but I WILL be 42 years old when I deliver in Feb. Any thoughts/suggestions? confused.gif

post #33 of 49

I read through this thread over on babycentre http://community.babycenter.com/post/a31840675/post_here_if_you_have_had_the_test

It looks like regardless of if your insurance agency covers it or not most people's out of pocket is $235 or $475 and sequenom isn't asking for more even if it's not covered.

 

It's mostly anecdotal evidence, but worth looking into as it seems EVERYONE that posts is saying the same thing.

 

For myself, I've decided for this pregnancy I'll do amnio and if any adverse reactions are caused by the amnio next time I'll go through the hassle of getting the MaterniT21 (Since I live in Canada it's going to involve finding somewhere in the US that will take me, and It will probably cost around $2k for the test, or maybe by then it would be available in Canada)

post #34 of 49
Quote:
Originally Posted by akemi View Post

I read through this thread over on babycentre http://community.babycenter.com/post/a31840675/post_here_if_you_have_had_the_test

It looks like regardless of if your insurance agency covers it or not most people's out of pocket is $235 or $475 and sequenom isn't asking for more even if it's not covered.

 

It's mostly anecdotal evidence, but worth looking into as it seems EVERYONE that posts is saying the same thing.

 

For myself, I've decided for this pregnancy I'll do amnio and if any adverse reactions are caused by the amnio next time I'll go through the hassle of getting the MaterniT21 (Since I live in Canada it's going to involve finding somewhere in the US that will take me, and It will probably cost around $2k for the test, or maybe by then it would be available in Canada)

 

Is this some sort of special version of genetic testing for people who are high risk? I also live in Canada and I am just getting what my doctor called "maternal serum testing" done where they take blood in the first and second trimesters to check for genetic disorders, but it was completely free and part of the whole prenatal check-up/testing package (though she said I was free to opt out if I so chose).

post #35 of 49

Teles, it's a new test that is available in the US to test for chromosome disorders. It's non invasive since it is a blood draw on mom and pretty accurate.

 

In Canada our alternatives with that degree of accuracy would be CVS or amnio which both carry a risk of miscarriage.

 

They offer the nuchal scan with blood testing here, but for higher risk (history of chromosonal disorders or advanced age)  my doctor recommended an amnio (I'm 38).

post #36 of 49

I'm a case manager for people with developmental disabilities.  I've worked in the DD field for the past 10 years (the first 6 with children and the last 4 with adults).  I love my job and can't imagine doing anything else.  That being said, I have not decided if I'll get any tests done.  One on had, I know how hard it is for families with a child with a developmental disability.  I've seen kids struggle with simple tasks, parents divorce because of the stress of raising their child, etc.  But I've also seen people with developmental disabilities do amazing things.  I worked with a little boy who they never thought would walk.  Every time he ran out of the room while I was teaching I just reminded myself over and over "at least he can walk, at least he can walk".  I've seen adults with disabilities overcome great hurdles to open their own businesses, live on their own (or with minimal support), get married, etc.  So, I don't know.    And I've seen kids who had perfectly healthy pregnancies and deliveries have an unexpected seizure resulting in brain damage- which no test in the world could predict.  So, I'm torn.  I guess I would like to know so I can be prepared, but I don't think I would terminate a pregnancy due to an abnormality.

 

If anyone finds out they have a kid with some sort of disability, feel free to contact me.  I can't give advice as a parent, but I can give you some "technical" information- medicaid, SSI, what schools have to legally do, etc.  I know every state/country is different, but at least I can give generic information.

post #37 of 49
I thought I'd just pop in and say that we had our nuchal screen done yesterday. The ultrasound took a while, since baby A was not in a good position. The I had my finger pricked and had a meeting with the doctor who went over all the different things that the scan looks for and what is normal and what isnt. We had really good nuchal fold measurements (1.3 and 1.4) , and Im low risk to begin with, so Im not too worried. The results will be in Tuesday- not nearly as long of a wait as I thought.
post #38 of 49
Quote:
Originally Posted by JessNP View Post

My insurance won't cover the MaterniT21 test. They consider it to be an "experimental" test. I do not have any family history of chromosomal abnormalities, nor does my DH but I WILL be 42 years old when I deliver in Feb. Any thoughts/suggestions? confused.gif

 

They charge a flat rate for MaterniT21.  It is $235 if you have PPO on your insurance card and like $450 if you don't.  They don't charge you anymore than that even if your insurance pays for zero. I had it done with an awesome doctor in Denver and am very glad I did, even though the results aren't here yet.  

post #39 of 49

My insurance is really crappy because my DH is self-employed and the pregnancy was totally unplanned. Our plan has a $3000 deductable. My insurance refused to cover the MaterniT21 test. Sequonom currently charges uninsured patients $1900 for the test. The insurance is billed $2700 for the same test. My doc wants to do a test called the Harmony Prenatal Test by a company called Ariosa (done at LabCorp). It will cost me $795 and that will count towards the deductable. It tests for the "big three" chromosomal abnormalities - Trisomy 13, 18 & 21. Here is a link about it http://www.ariosadx.com/

 

I'm bummed about my insurance, but I guess it could be worse. I have not been working too much lately because of my sister's cancer and current chemo treatments. Hopefully I will be able to work a lot more once her treatments are done in September and the kids are back in school.   

post #40 of 49

Had my first u/s today! It was soooo reassuring to see that little baby in there :) It's always a little surprising to me the first time I see that there really IS a baby in there!

 

My n/t measurement was good which was relieving as I tend to over worry about these sorts of things.

 

Also, notable for us Canadians, I found out that the hospital I went to was supposed to be set up to get the Harmony test (similar to MateriT21) starting this past June, but things were delayed. She is hoping it will be soon, but it probably won't be soon enough for us.

She already has the requisition forms and the kits to send the blood tests back and everything, but the bureaucratic details still need to be worked out. She wasn't sure it would be covered by OHIP  but she thought it would be around $800 if not.

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