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2nd Trimester
Do you ever wonder ...what if?
I try not to stress over things I can't control. TRY being the optimal word.
I see on some of the other boards, Mom's who have kids with Downs, or delays, or defects. And it does scare me. With out first one we had all the tests, he came out normal. I don't recall if we did genetic testing or not with the second one, but he's normal as well, with this one we declined it. I used the reasoning that if something were wrong, there's nothing I can do about it anyway. So, why stress? My OB had mentioned that they'd been getting an abnormal amount of false positives too. So I didn't want something to come back and say there was a problem, go through weeks of stress until a second test gave us the 'oh never-mind'. Now, I'm second guessing not having any genetics test. I have my big ultrasound one week from today and I'll have to check what they look for again,but I know that there are certain markers they look for and such for development issues.
I don't know where this is going, other than I don't know if I made the right choice, I wonder if I should have gotten the tests and taken the chance of a false positive.
Anyone else decline the genetic testing?
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Re: Do you ever wonder ...what if?
I have a lot of health problems and I am always worrying about my baby's heart (because I have a pacemaker for mine) and my husband has heart troubles. I just keep telling myself that if God waited 3 1/2 years to allow us to get pregnant, then he is not going to allow anything to go wrong with this child. I declined the testing because I know my baby is just fine and I keep telling myself that, through the worries!
That's my advice, just keep saying "my baby is going to be just fine"
IT HELPS!
We declined with our first. my nurse (who is pretty old school) said that they have a high false positive rate and that we're young and healthy and everything on our ultrasounds looked good, so there's no point in worrying ourselves.
We've also declined with this pregnancy.
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One of the many reasons I had the testing done. I don't like to have regrets and for us personally the results WOULD affect our decisions, especially if it was a Trisomy disorder where the baby would not survive.
I am sure everything is fine but I wouldn't worry about it too much since the decision was all ready made and you can't change it now. I hope everything looks great at your appointment!
My son doesn't have a genetic disorder, but was still born with a life-threatening birth defect. He required immediate transport, surgery and he'll be affected for the rest of his life. He looks absolutely normal on the outside, but inside he's abnormal.
We didn't have any genetic testing done. Not that it would have mattered, his genes are beautiful. Furthermore, the 20 week anatomy scan didn't reveal any anomalies either. He was born and SURPRISE!!
As much as it scared me at first, it's an amazing gift. Read the Holland story.
Welcome to Holland
I just met a woman on Monday whose daughter was born with Downs Syndrome, and there was no prenatal diagnosis despite testing.
Sometimes, it's just in the cards. I can tell you from spending 3 hours with this mother and child, they are an amazing family. She was a JOY, and your perspective changes.
I'm just not scared anymore, KWIM? I wouldn't change any of it for anything in the world. I don't have a different dream for my son. There is no known cause of my DS' birth defect, and it happens 1:4,000 live births. So, 3 babies are born with EA/TEF everyday in the US alone.
I don't believe in God, but I can clearly see my son for what he is -- a sign that it was time to slow things down and focus on things that enrich my life.
I didn't decline the genetic testing, and I'm glad I didn't.
I like information. Plus, you cannot get a "false positive" on a screening test. The screening test just gives you a risk number, not a positive or negative. I am good with numbers, so the risks are something that I can interpret pretty easily.
My baby has been diagnosed with a congenital heart defect at the 20w ultrasound. It can be associated with genetic abnormalities, but we knew right away that my risk was 1/10,000 of a baby with trisomy 21 or 18, so it was one less thing for me to worry about.
So, "why stress"? To me, not knowing would be more stressful. I am glad I had the screening and the u/s. Now we know exactly what we'll be dealing with in the delivery room and the first month of life.
I mean, why get the 20w ultrasound?
BFP #1 9/7/10, EDD 5/14/11, Violet born 5/27/11.
BFP #2 4/9/12, EDD 12/16/12, M/C Rory 4/24/12.
BFP #3 10/6/12, EDD 6/16/12., Matilda born 6/17/13.
Physiologically speaking they're not. And, I'm fairly certain that's what she was referring to. Furthermore, are we really going to get so up in arms over the use of the word NORMAL? Let's not pussyfoot around words, here. As a SAHM of an abnormal child, I don't find it offensive in the slightest.
There are reasons to have genetic testing done even if there's nothing you can do and/or you wouldn't terminate. Certain defects and concerns revealed via genetic testing can be prepared for at or before delivery (for example, needing to have a cardiac team at delivery for heart defects, needing to deliver certain ways for babies with spina bifida or neural tube defects where normal vaginal delivery can cause problems). That is why we had the testing done, because I wanted all information so that IF something is/was wrong we are prepared for it ahead of time and can learn as much as possible and consult with necessary specialists to get our child the best pre and post natal care available as soon as possible.
I realize you've already made your decision and everyone has their own preferences for what to do, but wanted to put this out there so someone still deciding will see it and understand that there are reasons to get genetic testing done even if you wouldn't terminate as that is the most commonly cited reason I see on the Bump for no testing and it ignores the myriad other reasons you might want to get tests done.
I understand the concern of "false positives" (screen positive when there's nothing wrong) as we had that experience in our first pregnancy and it was brutal, but it didn't change my decision in my next 2 pregnancies.
I opted for the genetic testing because I would rather know what the results were so I could research (if necessary) any potential disorders before my baby arrived. That way I would be better equiped to parent my child in the most beneficial way possible. That being said, my baby (so far) has not exhibited any health concerns via testing and ultrasound. My 20 week U/S is a few weeks away though so I'm holding my breath until then.
I declined, I also did with my previous two. I know I would be very low risk. Plus it wouldn't change anything. I will still love and care for the baby. I think knowing ahead of time would only add stress to the pregnancy, which in turn would put more stress on the baby. For me I just felt that unless you are willing to end the pregnancy, what is the purpose of knowing ahead of time.
Do you get anatomy scans? If so, why?
Per MOD, only a small percentage (I'm going to be generous and say 49% since that's less than half but still not even close to a small percentage) of parents actually receive a prenatal diagnosis of a birth defect.
Per Discovery Health, in the US approximately 150,000 babies per year are born with some form of a birth defect.
So, given my generous percentage, that's over 200 babies per DAY in the US who are born with birth defects with no prenatal diagnosis. SOOOOO, here's to flying blind, as you called it.
DH and I declined the NT scan and genetic testing because we are both 25 and healthy, with no family history of genetic problems. We also said we would never terminate the pregnancy so it didn't matter what the results said.
However, they found a soft marker for Down Syndrome at our Anatomy scan. We were completely shocked and unprepared. We opted to get the Quad screen (which came back negative) and tomorrow we are going in for another u/s to look for other markers & to check on the baby's growth. If they find another marker, we are considering an amnio.
It's a crazy whirlwind of fear and emotions... I declined the genetic testing thinking that I didn't want to worry myself over a false positive or over something I couldn't control. Now, looking back, I would've done the NT scan because declining it obviously didn't save me any worry.
I know a lot of people won't understand why we are opting for further testing if we plan on continuing this pregnancy. We will love our son regardless but we want to be prepared for his birth. And to tell you the truth, I just need to know.
I don't think there is a right or wrong answer to genetic testing. It's a learning experience for all of us.
Good luck at your u/s.
No you don't. I'm under 35, have two children with typical chromosomes, no family history of chromsome problems and I'm perfectly healthy. Someone has to be the 1 in the risk ratio. We were that 1. Nothing is guaranteed.
take the test, don't take the test, I don't care. But someone always has the be the 1.
I am so glad I did the Quad screen. I'm a worrier by nature and not knowing what was going on with my baby before the 20 week scan would've crippled me. Some people need as much knowledge as possible to have the reassurance (me) that everything is somewhat going okay. I think people jump to the conclusion too fast that someone who gets the early screenings are automatically going to terminate if the results aren't favorable. I did the screenings for peace of mind. End of story.
This exactly. I don't understand the logic at all, "we declined because we would never terminate". First of all, there are things that can be diagnosed, within seconds, that are 100% fatal, or will result in your baby living for only excruciatingly painful moments before passing away, and that is if they are lucky. Secondly, it has nothing to do with termination. It has to do with preparation. Why in the world would you NOT want to know if something was wrong with your child before birth? Imagine the guilt you would feel if something happened that could have been prevented by having the appropriate staff present at birth, or being at a hospital with the appropriatye NICU? The anatomy scan does NOT diagnose all things "major", for example heart defects. You need a fetal echo for that.
And I say this as someone who had one of the notorious "false positive". And FWIW, no one ever said, "your baby will have (insert diagnosis here)". It's a screening. And we opted for more testing, which came back fine. And we'll get even more, which I am thankful for. The peace of mind was worth the stress. I'd do it all again in a heart beat.
DD #1 born 9/07 ** DD #2 born 7/11 ** Operation Take Back My Body has begun 10/11
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Like what? I don't think people here are talking about amnio/CVS, I think most are thinking of NT Scan and Quad Screen which are just ultrasound/blood tests, both of which are done pretty routinely in any pregnancy. Only if you screen positive are you offered additional testing (and have the opportunity to decline), as the purpose of screening tests is to identify those who have a high enough risk that it might be worth it to them to consider some of the more invasive tests.
I'm definitely not trying to start up anything, or be too picky about OP's word choice, but I have known families who would be very offended to hear their child excluded from the "normal" category.
BFP #1 9/7/10, EDD 5/14/11, Violet born 5/27/11.
BFP #2 4/9/12, EDD 12/16/12, M/C Rory 4/24/12.
BFP #3 10/6/12, EDD 6/16/12., Matilda born 6/17/13.
And I understand that some people would be offended, but I don't feel this is one of those kinds of posts where a lesson in being politically correct is warranted. Not that you soap boxed or anything, but I didn't think it even warranted being stated. I slipped right past the references to normal and abnormal...
Originally SO and I had disagreed on testing. I didn't see the point, and as you said, it wouldn't change my love for LO or anything. However, SO made a good point of if we were to find out there was an issue, we could prepare ourselves through study and research, and not suddenly have a child with Downs and have no idea what it all really means. We did the testing for that reason, as we want to be as prepared as we can be.
Most of the genetically inherited issues my son say may get from me, are mental in nature and can't be tested for through those procedures (i.e. schizophrenia), but even then I've managed to stop stressing. I finally realized that even if he were to have issues, being that I've lived them, or in some cases at least researched them, I can know I'm doing my best to try to help him through it.
actually schizophrenia has been mapped to the 15th chromosome so you could have a microarray analysis performed on your amniotic fluid to see if your child's genes are affected.
Right, but I was referring to the regular blood tests and whatnot offered. We did the usual blood tests, and neck length measuring for downs, etc. I'm not going near any amniotic fluid testing, or anything like that. Anything that was even slightly risky we didn't consider.
I only get the tests that would diagnose issues that it's important for the doctors to know before delivery (like spina bifida, or when the intestines are outside of the body, etc...). I have no interest in accepting the miscarriage risk that comes with an amnio, so that eliminated a lot of tests that would only give a risk ratio unless one followed through with an amnio.
I'm getting an anatomy u/s because that can diagnose issues that can be treated directly after birth and can affect the chosen delivery method of the baby.