Reasons for not screening

EJChapman123 · September 2013

As NT scans approach I know from previous threads some are considering passing on getting this early testing. If so, what are your reasons?

Christinekeyser · September 2013

If this is about trying to find out if the baby has downes, I'm going to pass on the test. I think a test like that causes undue stress, especially when I have no plans on aborting if the test would be positive.

I'm grateful for this gift and that's why I won't do the test.

Sarahjess06 · September 2013

I did the test with my son. My dr told me I would have low chances anyway. It came back with some ridiculously low chance. I'll just pass this time around. I wouldn't abort my child anyway.

EJChapman123 · September 2013

I can understand it causing stress, but wouldn't you want to know so you could be prepared? For instance, if my child likely had downs, I would save like crazy so I could stay home with the baby long term to care for their needs. I would seek out therapy to help with coping mechanisms. I would choose a hospital that is best equipped for delivering special needs children.

I'm sincerely curious, I don't believe there to be a right or wrong answer - just want to understand why you wouldn't want to know what you were going to be facing.

MamaFantastic · September 2013

if i'm correct, you'd likely find out that information at the 20 week anatomy scan, right? i was told i was very low risk, and i wasn't even really given the direct option to have an NT scan (more of a casual "some women do it, but you're not high risk, so i see no need"). i suppose if i had put up a stink about it, that may have changed things, but we were happy to just trust the medical staff and go with their suggestion to skip it.

i'm all for preparedness, but i think it's still quite possible to find out at 20 weeks and have plenty of time to feel mentally, emotionally, intellectually and physically as prepared as one can possibly be to bring a special needs child home (not to imply it would be a piece of cake... i just don't necessarily think those extra 8 weeks would bring about dramatic changes in my preparedness as a mom in that situation.)

EJChapman123 · September 2013

spasticfantastic said:
if i'm correct, you'd likely find out that information at the 20 week anatomy scan, right? i was told i was very low risk, and i wasn't even really given the direct option to have an NT scan (more of a casual "some women do it, but you're not high risk, so i see no need"). i suppose if i had put up a stink about it, that may have changed things, but we were happy to just trust the medical staff and go with their suggestion to skip it.

i'm all for preparedness, but i think it's still quite possible to find out at 20 weeks and have plenty of time to feel mentally, emotionally, intellectually and physically as prepared as one can possibly be to bring a special needs child home (not to imply it would be a piece of cake... i just don't necessarily think those extra 8 weeks would bring about dramatic changes in my preparedness as a mom in that situation.)

This makes sense. My OB office recommends it, so I do it. If they didn't feel it important (which I could understand given the anatomy scan) I probably also would of passed.

I just never understood associating chromo testing with aborting the baby. I would never abort my child if they had downs, but I would want to know.

joyfullyfound · September 2013

We didn't get testing with DD, and won't this time either. If the baby has any health concerns, we wouldn't want it any less or seek to end the pregnancy. DH and I had a serious talk last pregnancy about whether we'd what to know about any issues just to prepare and educate ourselves, but decided in the end that it was better to save ourselves the anxiety and stress, and wait.

pineconey · September 2013

I don't believe in any form of testing based solely on a doctor's recommendation. The more testing they do, the more money they make. There are a lot of great resources out there to help us make an informed decision- take the time to do research to figure out what is best for you and your family.

TheatreStar86 · September 2013

We didn't feel like we had any indication of having chromosomal issues (based on age and family histories). If we were closer to 35, then we likely would. Factored into this is that this test wasn't covered by my insurance, so it would have been out of pocket.

That was our thought.

ETA: Also, I had assumed all along that I would want to get the testing done, but now that we've gotten here, I'm feeling ok without it. My doctor says about the choice to have it done is about 50/50 and she didn't see anything that would encourage us to change our minds on this.

MissyNWill · September 2013

A child with Down syndrome wouldn't lessen our desire for this child. Also, I had a friend do the test and it came back as highly probable. Her son was born perfect and it caused undue stress. I also think there are so many other things that your child can have that you can't "prepare" for such as medical issues. My friends infant son had serious stomach surgeries before he was a year old, as well as breathing problems, speech and motor issues.

Erin2516 · September 2013

We aren't going to do the test either. It isn't 100% and it can come back as probable when everything is ok (happened to my aunt). The next step after the NT scan would be CVS or amniocentesis, both of these carry a chance of miscarriage. My thoughts are that since knowing about downs early can't provide you with treatment, there's no sense in worrying myself or going for invasive follow up testing.

mrsstillotson · September 2013

Ladies remember that nothing is 100% in medicine. However NT does not only just test for Downs. It looks for thickening in the neck the correlates with multiple forms of trisomy including 21 (Downs) and 18. And when NT is pared with AFP blood testing it is over 90% accurate for trisomy which is better than either test individually. But more importantly if the AFP is negative and the NT is positive then there is a higher risk of the baby having cardiac problems. And some of these may not be picked up on a regular 20wk anatamoy US. But if a MFM runs a level 2 US then these issues can be better evaluated.
I agree with many of the PP that I would never terminate a pregnancy because of how my child was made. Every baby is a gift and some are just extra special

However I also would want to be prepared for whatever my child might need including extra or specialized medical care. Some cardiac issues if unknown could be very dangerous and I wouldn't want to ever say "I wish I had known". But again that is me and I know as moms we all have to make what we think is the best choice for our families and I respect your right to chose for your baby. I just wanted to make sure that you all had all the information.

zoopsiedaisy · September 2013

mrsstillotson said:
Ladies remember that nothing is 100% in medicine. However NT does not only just test for Downs. It looks for thickening in the neck the correlates with multiple forms of trisomy including 21 (Downs) and 18. And when NT is pared with AFP blood testing it is over 90% accurate for trisomy which is better than either test individually. But more importantly if the AFP is negative and the NT is positive then there is a higher risk of the baby having cardiac problems. And some of these may not be picked up on a regular 20wk anatamoy US. But if a MFM runs a level 2 US then these issues can be better evaluated.
I agree with many of the PP that I would never terminate a pregnancy because of how my child was made. Every baby is a gift and some are just extra special However I also would want to be prepared for whatever my child might need including extra or specialized medical care. Some cardiac issues if unknown could be very dangerous and I wouldn't want to ever say "I wish I had known". But again that is me and I know as moms we all have to make what we think is the best choice for our families and I respect your right to chose for your baby. I just wanted to make sure that you all had all the information.

This is exactly why I'm having trouble deciding. I have a friend who delivered a baby with trisomy 13, I'm not sure when, but he lived in the nicu on a respirator about a week before passing and they didn't have the slightest clue. I'm not sure which scenario is better, knowing ahead that something might be wrong and preparing or thinking everything is fine and being hit with the shock of it all plus the numerous decisions you have to make in those situations. And I'm not even referring to abortion. I'm talking much further along than 12 weeks. It's a tough one...

SIR12 · September 2013

Yes I will have it. In Canada it is called the first tri testing. Plus it is another chance to see my baby!

alphalyrae · September 2013

DH doesn't want to. He feels that we are young and the likelihood of issues is low and we wouldn't abort regardless of the issue. However, I feel that I would want to prepare for possible issues, and if necessary switch to a hospital with a higher NICU score. Ultrasounds only catch 30 to 50% of issues in fetuses and that's reason enough for me.

aschultz9 · September 2013

I'm still thinking about this. I am a "higher risk" because of my age. I'm not sure if I want the stress of a potential false positive screening result, or the stress of worrying about the potential for problems throughout the pregnancy due to my age. I need to talk to my husband and think about it more.

alphalyrae · September 2013

car seat said:

*lurking from Feb14*

SIR12, in Canada it's called NT screening, though it's done at the end of the first trimester so your doctor might call it that for the sake of simplicity.

I had a second tri loss last year. It was an IVF pregnancy so I had weekly scans. My 11 week scan was textbook perfect. Six days later I went for my NT scan and at that point they were able to identify a host of issues that indicated that it was not a healthy pregnancy. The nuchal fold was fine, but a ton of other things were not and it was clear that our baby would not be able to survive the pregnancy. A placental defect was also identified.

Long story short, my baby was definitely going to die, and I was at serious risk (of death) if we didn't terminate as soon as possible. I would not have made it to my anatomy scan.

There are no risk factors for a lot of issues. It's a personal decision, but if you can swing it it's a good opportunity to make sure that your baby and your placenta are developing properly.

Best of luck to all of you.

Thank you for your insight. (I mean this genuinely!)

Rrrrrachel · September 2013

We chose not to do it last time because I wouldn't have wanted an amnio and I didn't want a false "positive" to stress me out my whole pregnancy. My hcp said I could get the same info from later screenings.

This time is different because amnio isn't the only option for follow up anymore. So idk we may do it this time.

sweetpeace13 · September 2013

@dani+california, you are not alone. I just dont want to do deal with people calling me names. I envy your courage to speak up

ButtonGirl82 · September 2013

@dani+california i agree with you! I am adopted as well! I believe you need all the info in a situation before making a decision. Not knowing would cause me more stress. I realize its not everything but this test helps people get the probability of having a disorder and then they can decide whether they want to know more and its noninvasive. Wishing you much luck and happiness!

maelic · September 2013

There are definitely circumstances under which I would terminate. The NT scan is the first step; if it shows a higher risk, we'll think about the amnio or the CVS. Or the new blood tests, though I don't know if my doctor's office offers them.

snowclouds · September 2013

We didn't test with DS and will not be testing with this one. We see no point since if the test comes back with "high" chances then to confirm you would have to have an amnio which carries a 1% chance of m/c. The 20 weeks growth u/s catches markers for the Trisonomies or Down most of the time anyways so you would know you might need extra testing then.

maelic · September 2013

Yes, snowclouds, but I would rather terminate at 11+ weeks rather than at 20+ weeks, if abnormalities were detected. Also, the point of the NT scan is to evaluate whether the risk of an amnio is acceptable. I wouldn't do an amnio with no indication of it being a necessary diagnostic test, but I would if the NT scan showed markers.

snowclouds · September 2013

I realize that maelic. I was stating why we do not do the NT screening. We wouldn't abort so it's a useless test for us.

porterlove525 · September 2013

I will be having the testing. I have lost 2 babies and the most recent loss was due to a Trisomy so if I can know sooner, I would prefer. Given that I hemmoraghed with my first loss I'm not risking my life again if something is wrong.

I also have MTHFR and have lost both of my babies right at the point the placenta should take over so I want to make sure everything looks ok.

And as @carseat mentioned, the NT scan can show a host of other potential problems. It's a simple ultrasound and bloodwork so why not have it done?

ksr53777 · September 2013

DH and I don't do the screen because we wouldn't abort. We'll also deliver in a hospital with one of the most highly ranked NICU's in the nation, so if there is something wrong at the time of delivery they will be equipped to take care of it.

CandaceMarie321 · September 2013

It has never been offered to me. In fact I had to do a little research before answering here. I don't know if they are available in my area or if my insurance would cover it. That said, although I wouldn't turn it down if my Dr recommended it, I don't plan to ask about it. It doesn't seem to be accurate enough to bother given my very low risk.

LEIGHLOVE09 · September 2013

I did this with my DD and I'm doing it again this time. Insurance does cover it so its a non-issue for us. It's not about whether you would consider aborting or not, it's about knowing if your baby will be born with a disability and not only having the appropriate staff there to potentially save their life but also preparing you and your spouse on having a child with a potential disability. I'm type A so I would want to know all about whatever it was and know how best to handle a baby with it. That is also not something I would want to find out about in the delivery room.

apollonia10 · September 2013

@car seat - I'm sorry for your loss and for what you had to experience. You are courageous for doing what you did and for sharing it with others. Stories like yours are the reasons I don't hesitate to have the NT scan. As other posters said, it's not just about Down Syndrome, it's about Trisomy 18 and 30, both of which could (and likely would) be fatal. I wouldn't put my baby through the pain of a shortened lifetime if I can help it.

sambrownmac10 · September 2013

I asked my doctor if there would be any special arrangements or specialists at the delivery if it showed signs of Down syndrome and he said no. because of this we decided against it, and I won't get an amniocentesis done, I won't risk any pregnancy for it.
We have 3 high needs foster kids and I think people with Down syndrome are some of the nicest people you will meet.

b-ruth · September 2013

I have told my story before I would like to tell some of why I feel it's important to do the NT scan. At the NT scan my baby had a high nuchal fold. His chromosomes are normal but he does have congenital heart disease. He does have all four chambers in his heart but has really serious cardiac defects. So far he has already had three heart surgeries by 11 months old. At the anatomy scan they could have missed his heart issues. I'm thankful for the NT scan giving us a heads up. I recommend it but understand everyone's reasons for not wanting it. Oh and I was 26 and my OB said I was young and healthy and there was no reason I needed to have it. I think I was naive in thinking there could never be anything wrong with my baby...I was just going for the bonus extra ultrasound.

mooncusp22 · September 2013

DH & decided against it too....we can't do anything to change it and will accept lovingly what God has given us. My RN said that risks can pop up and your baby is perfectly healthy... that would stress me out more.

avidkeo · September 2013

I am going to add my voice to the others who admit that they would seriously consider an abortion if the NT, bloods and amnio show a high chance of something going wrong, and am definitely having the tests. I am over 30 so am heading into the high risk group, and recently had a very close friend who had a trisomy 16 pregnancy end badly.

I readily admit that I do not know how I will feel once I have the results if they point to the bad, but I have to admit that I am human, and I am fully prepared and eager to be a parent (and I know you can never know everything in life that is going to go wrong) I do not want to knowingly walk into a situation where I am going to be worrying for the rest of my life who will look after my child when I have gone. I work in healthcare and seeing what people have to go through with special needs children - particularly downs - I do not think I am strong enough to handle that.

snmetz7 · September 2013

we are going to do it because i feel like forewarned is forearmed. i would like to be prepared.

nikki912 · September 2013

I will get the scan so we can prepare or in some cases terminate if necessary. If my life is in danger as PP mentioned, or if the life of my baby would be short and painful we would terminate without question. As for other defects, we want to know of the possibility- even if it ends up being a healthy baby. I would want to save money and find the appropriate doctors and hospitals. Especially since I would prefer a home or birth center birth but would want a hospital birth if there was something work with my baby.

Kelseyl34 · September 2013

Christinekeyser said:
If this is about trying to find out if the baby has downes, I'm going to pass on the test. I think a test like that causes undue stress, especially when I have no plans on aborting if the test would be positive.

I'm grateful for this gift and that's why I won't do the test.

Agreed! I think it can go one of two ways...cause you undue stress (if you aren't high risk or 35 or over). Or give you relief. I think the former would be for me. Plus, doesn't it cost extra (not covered by insurance)?

Kelseyl34 · September 2013

EJChapman123 said:
I can understand it causing stress, but wouldn't you want to know so you could be prepared? For instance, if my child likely had downs, I would save like crazy so I could stay home with the baby long term to care for their needs. I would seek out therapy to help with coping mechanisms. I would choose a hospital that is best equipped for delivering special needs children.

I'm sincerely curious, I don't believe there to be a right or wrong answer - just want to understand why you wouldn't want to know what you were going to be facing.

Good point, I agree but maybe this is me being naive...I just feel the chances are so low I don't want to test. My doctor put it at a 1 in 500 chance of there being a problem. If it was a higher chance I would test.

TallaB · September 2013

I am a pediatric nurse and I think I am in the unfortunate seat of knowing too much. I have seen soo many disabilities and babies/children who are just not long for the world. And I sure as heck know being young and healthy does not guarantee you a healthy baby. I wouldn't hesitate to terminate my pregnancy if my baby was found to have a disorder that would cause nothing but pain before death. And I think having a heads up on nonlife threatening problems would give a little preparedness. Loong story short, I'll get the test

Linnea503 · September 2013

I just want to thank all the ladies who came forward in this post with first-hand accounts of why the NT scan can be very important. I was already planning on getting the scan and blood work, but your stories have reiterated for me the reasons why. This is NOT just about "I would or I wouldn't terminate." It's about the health of your child and the health of the mama.

mrsstillotson · September 2013

b-ruth said:
I have told my story before I would like to tell some of why I feel it's important to do the NT scan. At the NT scan my baby had a high nuchal fold. His chromosomes are normal but he does have congenital heart disease. He does have all four chambers in his heart but has really serious cardiac defects. So far he has already had three heart surgeries by 11 months old. At the anatomy scan they could have missed his heart issues. I'm thankful for the NT scan giving us a heads up. I recommend it but understand everyone's reasons for not wanting it. Oh and I was 26 and my OB said I was young and healthy and there was no reason I needed to have it. I think I was naive in thinking there could never be anything wrong with my baby...I was just going for the bonus extra ultrasound.

@b-Ruth thank you for sharing your story. It is exactly why we did the NT with our DS and are pushing for it again this time. You don't always know in life if you are going to be thrown a curve ball but if you could why wouldn't you?
Much love, hugs and prayers to all the mommas that have posted on here. Ultimately this is one of those important parent-choices we have to make and I respect everyone on here who chose to share. In the end we all want others to be able to make a smart and informed decision. Even if its not the same one we would make!

MyNameWasTaken · September 2013

I'm straddling the fence on this one. I'm 33, and in good health, as is DH, and we're low risk. We passed on the test with DD, and she's the picture of health. However, I leaning toward getting it done with this one. I want to know and be prepared. If it's a case where the pregnancy could threaten my life, I'd terminate; I've already got a child, and her needs trump those of her unborn sibling. If I learned that the pregnancy wasn't viable, or if the baby would not live long after birth, I honestly don't know if I'd terminate or let nature take it's course. Never been there, hope I never am, but I can't say for certain one way or another. If it turned out that I had a Down baby or it had issues that stood a chance at being resolved to where it could lead a happy life, I would not terminate, but I want to be ready.

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