Prenatal Genetic Testing
OtiWanKenobi
Posts: 340 Member
I'm sorry if this isn't the right site to ask this, but I'm torn about this decision.
Have any of you gone through prenatal genetic testing? They say you should get it done when your 35 or older. But I'm 34 and I've been told by several people that I should get it done. However, I am not at all comfortable with the idea.
Just hearing your thoughts or experiences of the subject will be much appreciated and helpful.
Have any of you gone through prenatal genetic testing? They say you should get it done when your 35 or older. But I'm 34 and I've been told by several people that I should get it done. However, I am not at all comfortable with the idea.
Just hearing your thoughts or experiences of the subject will be much appreciated and helpful.
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I was an IVF patient. Prior to getting started we did what amounted to a survey regarding our genetics. I was 33/husband was 36.
When I (finally) got pregnant with one that stuck, I was 34/husband was 37. We did the standard testing quad screening during the early part of the 2nd trimester. Honestly, we wouldn't have done anything had the results come back abnormal so I didn't even want it but it was bundled with a bunch of other stuff and I didn't really pay much attention.
I can say that I know several people who were told they were going to have a child with Downs or other issues....and all of them were fine. It's just a screening, not a definite indicator that things will not be normal. I miscarried at one point, and was told it was likely a genetic problem (I didn't have the tissues tested so we don't know for sure). A couple friends had the tissues tested after their miscarriages and they were ALL genetic problems. That being said, I think the body naturally terminates a lot of the pregnancies that have severe genetic issues.
I would say it depends on the person. For me, I was fine not knowing. But it was really nice to get the "all clear" phone call from my OB. If you're the type that needs to know everything, I'd think it's worth it. Either it gives you peace of mind or the ability to prepare for what "could be".
**edited to fix our ages. I originally wrote our ages at the due date, not the conception date.0 -
It's all personal preference. Have you thought about what you would or would not do in the event that you found out your baby had some type of genetic issue? If you were to keep the baby, knowing there is an issue might help you prepare for a special needs child. If you wouldn't keep the baby in the event that it had an issue, it would clearly be imperative to do the testing so you could find out. Many miscarriages are a result of a chromosomal/developemental issues and are not indicative of any genetic disorders that you may or may not be carrying. There are several blood tests that you can do that will indicate whether or not you are a carrier for certain disorders. If you find out you are a carrier, you can then have your partner tested to see if he is a carrier as well.0
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I turned 35 the month before I got pregnant. I did not have amnio or CVS. It was a personal decision. I did have the sequential screen. It works like this: at 12 weeks you get an ultrasound and they measure the nuchal fold on the back of the baby's neck. they also do bloodwork. At 16 weeks, they do bloodwork again. A few days later, you get the results. the results are given in the chance that your baby has a certain disorder. For example, mine were 1 in 10,000 that he had Down Syndrome, 1 in 10,000 that he had Trisomy 18, and 1 in 2400 that he had spina bifida. Then at the 20 week ultrasound they look for signs again that he has those things. (My baby still doesn't show any signs). I recommend this - if the test would have shown a significan risk, I would have had amnio or CVS but I didn't need to.0
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My doctor still wanted me to have an amnio after a negative screen. I was like No Way! I know the uterus is old, but why should I put the baby and my body through that with a negative screen.0
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I'm 35 and did have the standard screenings. I have family history of various genetic disorders and knew if there was anything seriously wrong with this child I wouldn't have wanted to put the older children through the difficulties. I would definitely have terminated if the child had had serious problems. But I knew all that before starting the pregnancy.
Depends what positive results would mean to you...0 -
I turned 35 the month before I got pregnant. I did not have amnio or CVS. It was a personal decision. I did have the sequential screen. It works like this: at 12 weeks you get an ultrasound and they measure the nuchal fold on the back of the baby's neck. they also do bloodwork. At 16 weeks, they do bloodwork again. A few days later, you get the results. the results are given in the chance that your baby has a certain disorder. For example, mine were 1 in 10,000 that he had Down Syndrome, 1 in 10,000 that he had Trisomy 18, and 1 in 2400 that he had spina bifida. Then at the 20 week ultrasound they look for signs again that he has those things. (My baby still doesn't show any signs). I recommend this - if the test would have shown a significan risk, I would have had amnio or CVS but I didn't need to.
^^^^ See this...I can work with. The whole thought of amnio or CVS really frightens me because there is a chance it may cause a miscarriage. Rare...but possible. Besides, I don't want to doctors to mess with my little nugget whose happily growing in my womb.
The other part of why I'm cautious of doing this is because I don't think I'd want to know if my baby will have a genetic defect. I don't think it will change anything and I most certainly wouldn't end the pregnancy. Also, I know myself, and if I knew there was a strong chance of my child being born with a defect I would likely be anxious and sad the entire pregnancy...regardless if I got counseling or whatnot.
But I will definitely talk to my doc about doing a pre-screen instead of doing an amnio.
Thanks so much for your feedback!!! Very very very helpful!0 -
Glad to be of help. Good luck!0
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Hi! I am 38 and we had genetic screening done (Verifi test and an NT scan), however because of my age there was a higher risk. However when you say "genetic screening" know that there are now lots of options. ie you no longer need to have an invasive test such as an amnio or CVS. There are newer tests like Verifi (this is what I had), Materni21 and Harmony. The Verifi test gave us a yes or no answer and is a simple blood test in which they spin down your blood and extract the fetal DNA. Had answers back in 7 days (they say 8-10 working days). I would say if you are concerned, do your research and talk options through with your doctor. We thought we had to have an amnio done after talking with a genetic counselor and when we told our dr that was what we were opting to do because we wanted to be sure she about flipped out. Her response was "why would you do an invasive test when you can do the Verifi test with no risk." We were shocked (and happy that we didn't need to take the risk) and she was not very happy that the genetic counselor did not mention the Verifi test.
Be sure to talk with your insurance as well because they may not cover testing if you are not considered high risk. Verifi had a deal where if your insurance didn't cover (ours did) they cut their cost to you down to something like $250 - can't remember exactly but the original cost was in the $1500-2000 range. However you will want to make sure they offer that if you are under 35. We also had issues with the way our Drs office coded it with the insurance. They didn't code it correctly at first, but eventually we got them, Verifi and our insurance provider on the phone and they worked it out. Bit of a hassle, but was worth it.
Hope this helps and best of luck!0 -
I chose not to get any screenings done with any of my pregnancies (I'm pregnant with my third child). I wouldn't terminate the pregnancy for any reason, other than if it were impacting my survival, so I don't feel it's worth the risk.
It really depends on what you would do based on the results - positive or negative. If there is no difference in answer between the positive and negative results, I don't see why it's necessary to be done in the first place.0 -
I'm not interested in genetic testing so didn't get it done. I am having one ultrasound and it will be by a MFM specialist, so if there are any major problems with the baby's organs, they would be discovered. There are some issues that are particular to Down Syndrome, and those issues would be a concern to me, if the baby was healthy and had Down Syndrome I don't really need to know that ahead of time
I am having testing to see if I'm a carrier for CF because it runs in my mother's family, and if I am then my husband will be tested. I'd like my kids to have that for their medical history.
Editing to add that I'm 33 and my choices haven't changed since my first pregnancy at 25. It's definitely a personal decision, and I hope you don't receive any pressure to do something that you don't want (or need) to do.0 -
It is a good idea to check with your insurance. Mine would not pay for the Materni21 unless I had a high risk on the sequential screening, which is why we started with that. The Materni21 sounds like a good test but we didn't want to pay out of pocket for it if we didn't need it.0
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I had genetic counseling and testing with my last two babies due to my age (36 and now 39). I never opted for the amnio but I did the quad screen for both. With this last one I also did the panorama test which gives all of the same information as an amnio (except neural tube defects) but is much less evasive. It was a simple blood test from me and a cheek swab for dad. From those samples, they can extract the baby’s DNA from your blood. It ran me 198 dollars after insurance and it was worth every penny. For me it is not a question as to whether I would terminate or not if there was something wrong. I could never do that.....it is more about being prepared.0
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I did the quad screen which is just a blood test and it came back elevated for spina bifida. I went and had a level 2 ultrasound and spina bifida was ruled out by that. Even with that though it was always in the back of my head. I mainly wanted to get it done and have all negative results just to give me that peace of mind.
I would not do anything invasive like an amnio bc you wouldn't want to put your baby at risk. I would only get it done if you really want to know if something is wrong and if you think you can deal with it possibly coming back as a false positive result like mine was (very common). My baby turned out to be perfectly healthy!0 -
Be sure to talk with your insurance as well because they may not cover testing if you are not considered high risk. Verifi had a deal where if your insurance didn't cover (ours did) they cut their cost to you down to something like $250 - can't remember exactly but the original cost was in the $1500-2000 range. However you will want to make sure they offer that if you are under 35. We also had issues with the way our Drs office coded it with the insurance. They didn't code it correctly at first, but eventually we got them, Verifi and our insurance provider on the phone and they worked it out. Bit of a hassle, but was worth it.
Hope this helps and best of luck!
Thanks everyone. You, know I totally failed to think about the insurance aspect of all of this. I will definitely have to look into it. Very good point indeed.
I guess I'm becoming more comfortable with idea if there are other forms of screening that are not invasive. But that's still up in the air meanwhile I do more research.
Thanks to everyone that wrote back with their experiences. It's been really hard since I can't talk to my girlfriends since our pregnancy is still under wraps.0
