OB called and told me I was positive for down syndrome

myrwolo28 · June 2014

I'm 23. I have a 6 year old son and my pregnancy with him was normal. My husband and I are expecting and I'm 17 weeks along. Last week my doctor calls to tell me my blood work came back 1 of 120 positive for down syndrome. We have no history of special needs in our family, although I am aware it has to start somewhere. I would just like to hear from other moms who have been given positive results, and did or did not end up having a baby with ds. Also did you have the amnio? We've decided to do no further testing because we aren't terminating anyway. Putting it in God's hands and however our baby is born, so be it. I do however want to hear other women's stories/advice. No fun keeping it all in.

Mama2be19 · June 2014

My moms best friend and my aunt as well were both tested for it and had the result turn out positive but both have very heathy babies with not even a trace of Down syndrome in either of them! Hope this can help

Unknown · June 2014

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rae76 · June 2014

A friend of mine had a 1 in 50 result and her son was born without DS. Her OB did a followup test and another sono and both of those came back with no signs of DS. I would talk to your OB about other followup tests.

Disneygeek77 · June 2014

With my first, they thought she might have a certain heart defect where one in 3 children born with this defect had DS. We then chose an amnio because we wanted to prepare ourselves for having a child with special needs. The amnio results were no chromosonal abnormalities.

We then went to a pediatric cardiologist who was able to give us a definitive diagnosis of her heart defect.

poptart109 · June 2014

My dr told me the same- that DS was "positive for Downs" and suggested we terminate. Which to me was not an option. Our odds were 1:220. We opted for a level 2 u/s to check for markers and after not finding any declined the amnio. DS is perfectly normal. We not only switched drs for this pregnancy but opted out of the AFP test. We just went right for the nt scan.

indianaalum · June 2014

What test gave you that odds? If it was NT or quad, then know it is just a RISK factor, not diagnostic at all.

I was given a 1:45 chance based on NT scan, but Panorama test (which is one of many NON-invasive blood tests available now---none of which put the baby at risk, they test your blood) came out "negative" so please try to relax. TRUST ME. I get you won't relax until you hear "all clear" but I do say it from experience.

Those NT scans freak alot of people out when the truth is, it is all statistics and does not necessarily mean your child HAS the disorder.

I highly encourage you to ask your doctor to do one of the tests I mention (Matern21, Panorama, harmoney, Verify, etc)

Hang in there. I just finally got the clear so I truly know how terrifying and stressful it can be

Saintelizabeth · June 2014

It's heartbreaking to hear of doctors suggesting termination for DS. I have an family member with Downs and grew up with children and adults with Downs around me my whole life. A child with Downs will require more medical attention, but they will still have the chance to grow up and live a happy and productive life.

Saintelizabeth · June 2014

@RedheadBaker‌ I'm not judging the parents, you're right it's their choice. I'm pro choice with any pregnancy it's none of my business what a women does with their body. I think it's sad when a doctor tells a woman they should terminate a pregnancy with downs. That's a hard decision and it would be easier if the doctor gave them facts and information and said it's up to you, just know you have a choice. I'm sure the majority of doctors do that. But a user earlier in the thread said her doctor suggested she terminate the pregnancy and she decided not to. Ultimately switching doctors all together. That particular kind of situation bums me out.

indianaalum · June 2014

Elbug said:

As others have said - there is no positive or negative tests other than CVS or amnio testing. Those are the only two diagnostic tests. I'm surprised your provider would report to you a "positive" test result without counseling you properly or referring you to a geneticist.

My NT scan was similar at ~1 in 100. I followed up with a NIPT test (specifically, I took the Harmony test, similar to the MaterniT21 test etc) which tests circulating fetal DNA. Again, these tests are only screening at this time since they are new and are not diagnostic but have much higher accuracy and far fewer false positives. The NT Scan with corresponding blood work have a decent amount of falsely elevated risk categorizations (or in other terms "false positives").

You may or may not be offered the NIPT test since 1 in 100 or better is still just considered elevated risk, its not high risk. High risk is typically for greater than a 1:50 chance. If they offered you an amnio though I'm shocked they didn't offer you the NIPT test. Ask about it. I did further testing to see if the amnio would be beneficial. My NIPT test came back at less than a 1 in 10,000 change for Down's.

Further testing absolutely does apply only to couples looking to potentially terminate. That makes me absolutely insane when I hear that thought process from people. Knowing if your child has the potential for congenital issues is very important since it may impact how your delivery is handled. Some Down's baby's have heart defects or bowel issues requiring a specialized doctor to be available shortly after birth. Knowing this information would help you decide where and with whom to deliver.

I was told anything less than 1:250 was high risk

indianaalum · June 2014

Saintelizabeth said:

It's heartbreaking to hear of doctors suggesting termination for DS. I have an family member with Downs and grew up with children and adults with Downs around me my whole life. A child with Downs will require more medical attention, but they will still have the chance to grow up and live a happy and productive life.

I totally agree. I also hate that they would even suggest it after an NT scan even more. I have found more women in this world who were told they were HIGH risk because of that stupid test. It makes me soo worried that people are aborting perfectly normal babies out of pure fear from that stupid test.

I had 3 weeks of panic from that test....and then found out the baby is fine

indianaalum · June 2014

msspeedymarie said:

poptart109 said:

My dr told me the same- that DS was "positive for Downs" and suggested we terminate. Which to me was not an option. Our odds were 1:220. We opted for a level 2 u/s to check for markers and after not finding any declined the amnio. DS is perfectly normal. We not only switched drs for this pregnancy but opted out of the AFP test. We just went right for the nt scan.

Any doctor that said this deserves to lose his medical license. A 1:220 risk is less than half a percent. And a doctor should certainly not be suggesting termination unless the baby for sure has something that is incompatible with life or the mother's life is in danger.

OP, after the NT scan we were given a 1:18 odds (about 6%) for Down Syndrome. We did the Mat21 test, which gives a 99% accuracy, and that said we were fine. My 10 month old is sitting next to me right now with no chromosomal abnormalities.

1:120 is higher than normal, but by no means a certainty. I don't know if I'd even recommend the Mat21 or Harmony type test for you, as those have an accuracy of 99%, so they wouldn't really reduce your risk, since your risk is already about 1% (if the Mat21 said you were clear, you'd still have a 1% risk, since the test is 99% accurate).

Your doctor should be sending you to a genetic counselor who can give you more information about follow-up tests. I agree with others that you might want to do something, but your level 2 ultrasound at 20 weeks might be enough. If something is going on, knowing about it before birth doesn't mean termination, just having all the information you need to advocate for your child. Good luck.

From experience, I disagree.

I was given a 1:45 chance of Down's after NT scan (about a 2percent chance). Those were the scariest 3 weeks until I got the Panorama tests back which placed me at "low risk" which usually mean 1 in 10,000 chance with a 99 percent accuracy rate. To me, that means 2 totally different things actually when you look at it that way. When you see THAT difference in risk factors, your anxiety remarkable shoots wayyyy down and you can finally relax.

unless you have gone through it yourself, it is really hard to say how much that Panorama, Matern21, etc is needed for a sense of relief...or preparation

buddha2490 · June 2014

I hate the medical system.

I work as a population genetics statistician and there is a huge problem these days with doctors and companies trying to explain genetic risk to their patients. The OP is 23 years old and has some genetic profile that has been linked to a higher risk of down syndrome and the risk is calculated at 1:120, less than 1%. These numbers don't actually make sense because down syndrome is an age related risk not really an innate risk. Yes, genetics probably play a role, but the big issue is age. At 23 the the risk of having a child with down syndrome is less than 0.1%, about 1:1250 births and that's not a risk worth worrying about. By age 40 the risk is about 1%, and thats about the point where genetic variation is probably more important.

The problem is that doctor's should not be ordering these tests for a 23 year old woman because the results come back and the doctor says these numbers and women freak out and money gets spent. The risk associated with an amnio that you might get is now greater than the risk of you having a baby with downs syndrome, that is the real result of that test the doctor gave you.

I'm not unsympathetic. I went for the 18-week ultrasound with my wife and the doctor read out all the tests she wanted to do, I explained how they were all a waste of resources. American medicine has some real problems, we've replaced very simple clinical logic for expensive and low-specificity tests and we get bad results.

udenbyjj · June 2014

I had genetic testing done because my first childs down syndrome risk was 1 and 64. With this pregnancy, the risk was 1 and 94. Still VERY high for my age. I can tell you, it means NOTHING. If you can, talk to a genetic counselor. I opted for an ultrasound and a blood test that can take the babies chromosomes from moms blood and they can look to see if anything is wrong. Both my children have nothing wrong with such a high risk in the genetic testing. My first child was born absolutely perfect, no down syndrome. My second child hasn't been born yet, but will be perfect. The amnio is a risk I was not willing to take for either of my pregnancies.

amtay825 · June 2014

I was given a 1:8 chance of downs with the first tri screening. We chose to do the panorama test after that; its just a blood test. We had no plans of termination either, but we wanted to be prepared. I'm already high risk so we have tons of ultrasounds. Each ultrasound hasn't shown any signs of downs. The panorama test came back with no risks and I was told no downs.

chauliodus · June 2014

buddha2490 said:

I hate the medical system.

I work as a population genetics statistician and there is a huge problem these days with doctors and companies trying to explain genetic risk to their patients. The OP is 23 years old and has some genetic profile that has been linked to a higher risk of down syndrome and the risk is calculated at 1:120, less than 1%. These numbers don't actually make sense because down syndrome is an age related risk not really an innate risk. Yes, genetics probably play a role, but the big issue is age. At 23 the the risk of having a child with down syndrome is less than 0.1%, about 1:1250 births and that's not a risk worth worrying about. By age 40 the risk is about 1%, and thats about the point where genetic variation is probably more important.

The problem is that doctor's should not be ordering these tests for a 23 year old woman because the results come back and the doctor says these numbers and women freak out and money gets spent. The risk associated with an amnio that you might get is now greater than the risk of you having a baby with downs syndrome, that is the real result of that test the doctor gave you.

I'm not unsympathetic. I went for the 18-week ultrasound with my wife and the doctor read out all the tests she wanted to do, I explained how they were all a waste of resources. American medicine has some real problems, we've replaced very simple clinical logic for expensive and low-specificity tests and we get bad results.

So who decides what risks are worth worrying about? I think it depends on the outcome. 1:1250 is not a high risk to me if you tell me that is my risk of getting food poisoning from eating food cart food in NYC. I'm totally down with that. But if you told me my risk of dying in from the flu was 1:1250, I may reconsider getting a flu shot if i was an abstainer. Clinical logic is all well and good, but when you are talking about a life changing event and the stakes are higher I'm not particularly concerned about prenatal testing being "too costly." Like you said, genetic risk implies that the issue is genetic, which Tri21, and most of the trisomies are not genetic but age based. I don't think the quad screen/integrated screen is really a genetic risk screen, its a risk for that individual baby screen.

MMason12 · June 2014

Like PP have said you have not gotten a confirmation that your little one will have DS, you just have an increased marker that came back on a test.

I can understand you not want the amino but I would check if your insurance would cover the Harmony (or something similar) test. This is a non-invasive test that will give you 99.9% accurate results.

Really, terminating the pregnancy has nothing to do with wanting or having additional testing done. If your little one is going to have DS there are a lot of special needs that come with their delivery. They will need special medical care and you might even have to deliver at a different hospital. Having additional testing done is more about learning whether or not you should be finding, learning and preparing additional medical resources for your little one. I would want to know - must more accurately than the results you got - if my little one was going to have DS so that we could begin to educate ourselves on what their needs would be and get a medical team in place. We wouldn't terminate a pregnancy either, but we surely would want additional information.

buddha2490 · June 2014

chauliodus said:

So who decides what risks are worth worrying about? I think it depends on the outcome. 1:1250 is not a high risk to me if you tell me that is my risk of getting food poisoning from eating food cart food in NYC. I'm totally down with that. But if you told me my risk of dying in from the flu was 1:1250, I may reconsider getting a flu shot if i was an abstainer. Clinical logic is all well and good, but when you are talking about a life changing event and the stakes are higher I'm not particularly concerned about prenatal testing being "too costly." Like you said, genetic risk implies that the issue is genetic, which Tri21, and most of the trisomies are not genetic but age based. I don't think the quad screen/integrated screen is really a genetic risk screen, its a risk for that individual baby screen.

That's actually about the population-wide risk of dying from the flu, much higher if you are older or have some other comorbid disease. People don't realize how many people die from influenza each year, its pretty high.

But more to your point... you're right, I shouldn't tell people what to worry about. If you want to worry about a 1:1000 chance of something happening then go ahead and stress yourself out. I am talking more about clinical practice. Here is the math that the doctor is working with: Risk of DS in a young women: 1:1250. The probability of a woman with a positive DS panel actually having a child with DS is 0.025... Very low, this is not a very specific test.

But a woman has this positive test and what is the doctor to do? Well, she is going to offer more tests. The patient is scared because she doesn't understand what these numbers mean and she accepts these tests. The risk of miscarriage after an amnio is about 1:300. So what just happened? This young woman that had a risk of DS around 1:1250 just traded that low risk for a 4x higher risk of having a miscarriage. Do you think this is rational?

The point is, these screenings should only be offered to patients that are actually at risk of disease, that is when they were designed to work best. Offering them to low risk patients only increases the rate of further procedures that confer additional risk. Overscreening actually harms and kills a lot of people that were never sick to begin with.

Makes you wonder how many people have abortions because they were worried about this 1:60 risk predicted by the test?

buddha2490 · June 2014

I'm very sorry that you are the one in that 1,250. What I am saying is that that 98.5% of positive tests are wrong in a woman your age and can lead to further tests that have relatively higher risks of complications. In this context, performing the initial test does more damage than benefit for women without any risk factors (age). There are exceptions such as yourself there are many more women given detrimental medical 'care'.

[Deleted User] · June 2014

I am on the other side of this. I was given odds of 1:10000 being negative for Down Syndrome. At birth...surprise....she has Ds. No makers on NT and anatomy scan...nothing at all. With Ds there are certain health issues that can occur. Being prepared is very helpful so you can plan and decide what needs to be done ahead of time.

If I do have more children I would like to have further testing to be as sure as possible if they will have Ds or not. The first 6 months after her birth were really hard and painful and I don't want to be surprised and be put in that position again. Hopefully you will have good news.

P.S. Around 90% of babies diagnosed with Ds are terminated.

indianaalum · June 2014

joanna2004 said:

I am on the other side of this. I was given odds of 1:10000 being negative for Down Syndrome. At birth...surprise....she has Ds. No makers on NT and anatomy scan...nothing at all. With Ds there are certain health issues that can occur. Being prepared is very helpful so you can plan and decide what needs to be done ahead of time.

If I do have more children I would like to have further testing to be as sure as possible if they will have Ds or not. The first 6 months after her birth were really hard and painful and I don't want to be surprised and be put in that position again. Hopefully you will have good news.

P.S. Around 90% of babies diagnosed with Ds are terminated.

that number makes me sad. i had a "scare' for 3 weeks as i was one of those who received the "high risk' phone call from the Nt scan. during that 3 weeks, i tried to prepare myself with knowledge if the baby had DS. never once did i consider abortion. that statistic makes me sad.

in the end, panorama changed those risk factors for me to be less than 1in 10,000

[Deleted User] · June 2014

@RedheadBaker‌ whoa....not judging one bit. If I had known before hand I probably would have terminated. @buddha2490‌ had poised a question I was just answering it. I don't know how that statement shows judgement.

[Deleted User] · June 2014

@RedheadBaker said:

joanna2004 said:
@RedheadBaker‌ whoa....not judging one bit. If I had known before hand I probably would have terminated. @buddha2490‌ had poised a question I was just answering it. I don't know how that statement shows judgement.
That comment wasn't directed at you.

Pheww. Thanks. Now i feel like a dummy.

Unknown · June 2014

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Unknown · June 2014

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indianaalum · June 2014

RedheadBaker said:

indianaalum said:

joanna2004 said:

I am on the other side of this. I was given odds of 1:10000 being negative for Down Syndrome. At birth...surprise....she has Ds. No makers on NT and anatomy scan...nothing at all. With Ds there are certain health issues that can occur. Being prepared is very helpful so you can plan and decide what needs to be done ahead of time.

If I do have more children I would like to have further testing to be as sure as possible if they will have Ds or not. The first 6 months after her birth were really hard and painful and I don't want to be surprised and be put in that position again. Hopefully you will have good news.

P.S. Around 90% of babies diagnosed with Ds are terminated.

that number makes me sad. i had a "scare' for 3 weeks as i was one of those who received the "high risk' phone call from the Nt scan. during that 3 weeks, i tried to prepare myself with knowledge if the baby had DS. never once did i consider abortion. that statistic makes me sad.

And here we go again ... it is not your place to judge if others are unwilling or (emotionally or financially) unable to handle a special needs child.

did I tell someone else not to abort? NO, I just simply said i find that statistic sad. and i do. I stick to my statement. It IS sad. I keep in mind, some of those aborted may have been children who turned out to NOT have down syndrome because it was women who "paniced" before getting a final diagnosis.

I think one of the downsides (though, there are more MANY postivies) of things like nt scan, triple screen, etc are that there are alot of false positives or misinterpretations of the numbers presented to women, so women panic and abort because they assume it means the child has down syndrome. i had to wait 3 weeks to find out my baby does not have down syndrome. My guess is that there are a ton of women out there who choose to abort, rather than wait out the 3 weeks (for a variety of reasons such as timing of pregnancy/legalization of abortion in their state) rather than wait to get the final answer..In some states, that 3 weeks could make a difference being allowed to abort or not, so i DO think someone women have inadverntatntly aborted a baby that was healthy without them realizing it. To me, that IS SAD. judge ME or not, I stick to that statement because i DO believe many "healthy" babies may have accidentally been aborted due to the panic of hearing a "risk factor' rather than a 'diagnosis'

One of the things I found comfort in when i was waiting in my 3 weeks was to read the down syndrome parenting board and pregnancy board. one of the most common things stated on that board is that the women absolutely thought it was a death sentence and then once the baby was born, they never realized how much they could love the child and that the Down Syndrome was not nearly as terrifying in REAL life to raise a child with Down Syndrome as they havd thought it would be. as it was when they thought it was during pregnancy. to ME, that is another reason why i find the 90 percent number scary. People panic when they hear the news, i do think many people could be amazing parents and love the child more than they realize, if they didn't act in panic. that is all i am saying. There should be more counseling and education when a "risk factor" is named or a "diagnosis is given".

On a side note, there is a long waiting list for families wanting to adopt down syndrome children. people never realize that fact, as well.

Do I think 90 percent being aborted is sad? HELL YES because of all the reasons i mentioned above. i could care less if you guys disagree.

This wasn't an 'abortion" debate. it was about the REASONS why that 90 percent is so high is what makes me sad.

indianaalum · June 2014

RedheadBaker said:

indianaalum said:

RedheadBaker said:

did I tell someone else not to abort? NO, I just simply said i find that statistic sad. and i do. I stick to my statement. It IS sad. I keep in mind, some of those aborted may have been children who turned out to NOT have down syndrome because it was women who "paniced" before getting a final diagnosis.

I think one of the downsides (though, there are more MANY postivies) of things like nt scan, triple screen, etc are that there are alot of false positives or misinterpretations of the numbers presented to women, so women panic and abort because they assume it means the child has down syndrome. i had to wait 3 weeks to find out my baby does not have down syndrome. My guess is that there are a ton of women out there who choose to abort, rather than wait out the 3 weeks (for a variety of reasons such as timing of pregnancy/legalization of abortion in their state) rather than wait to get the final answer..In some states, that 3 weeks could make a difference being allowed to abort or not, so i DO think someone women have inadverntatntly aborted a baby that was healthy without them realizing it. To me, that IS SAD. judge ME or not, I stick to that statement because i DO believe many "healthy" babies may have accidentally been aborted due to the panic of hearing a "risk factor' rather than a 'diagnosis'

One of the things I found comfort in when i was waiting in my 3 weeks was to read the down syndrome parenting board and pregnancy board. one of the most common things stated on that board is that the women absolutely thought it was a death sentence and then once the baby was born, they never realized how much they could love the child and that the Down Syndrome was not nearly as terrifying in REAL life to raise a child with Down Syndrome as they havd thought it would be. as it was when they thought it was during pregnancy. to ME, that is another reason why i find the 90 percent number scary. People panic when they hear the news, i do think many people could be amazing parents and love the child more than they realize, if they didn't act in panic. that is all i am saying. There should be more counseling and education when a "risk factor" is named or a "diagnosis is given".

On a side note, there is a long waiting list for families wanting to adopt down syndrome children. people never realize that fact, as well.

Do I think 90 percent being aborted is sad? HELL YES because of all the reasons i mentioned above. i could care less if you guys disagree.

This wasn't an 'abortion" debate. it was about the REASONS why that 90 percent is so high is what makes me sad.

A) No, it would be unethical (or in some cases, illegal, depending on how far along the pregnancy is) for a doctor to abort a fetus that is SUSPECTED of having Down Syndrome.

Source for you assertion that there is a waiting list of people who want to adopt children with Down Syndrome?

Here you go: this took about 2 seconds, so I am sure there are more resources out there

https://www.washingtontimes.com/news/2006/feb/12/20060212-112732-6787r/

https://community.babycenter.com/post/a31384410/adoption_agencies_for_infants_or_children_with_ds

https://reecesrainbow.org/

Also, I know someone personally who adopted 2 children with down syndrome after they were done raising their own biological children. There are good people out there who do this. I am sorry you find that so hard to believe

indianaalum · June 2014

RedheadBaker said:

indianaalum said:

RedheadBaker said:

did I tell someone else not to abort? NO, I just simply said i find that statistic sad. and i do. I stick to my statement. It IS sad. I keep in mind, some of those aborted may have been children who turned out to NOT have down syndrome because it was women who "paniced" before getting a final diagnosis.

I think one of the downsides (though, there are more MANY postivies) of things like nt scan, triple screen, etc are that there are alot of false positives or misinterpretations of the numbers presented to women, so women panic and abort because they assume it means the child has down syndrome. i had to wait 3 weeks to find out my baby does not have down syndrome. My guess is that there are a ton of women out there who choose to abort, rather than wait out the 3 weeks (for a variety of reasons such as timing of pregnancy/legalization of abortion in their state) rather than wait to get the final answer..In some states, that 3 weeks could make a difference being allowed to abort or not, so i DO think someone women have inadverntatntly aborted a baby that was healthy without them realizing it. To me, that IS SAD. judge ME or not, I stick to that statement because i DO believe many "healthy" babies may have accidentally been aborted due to the panic of hearing a "risk factor' rather than a 'diagnosis'

One of the things I found comfort in when i was waiting in my 3 weeks was to read the down syndrome parenting board and pregnancy board. one of the most common things stated on that board is that the women absolutely thought it was a death sentence and then once the baby was born, they never realized how much they could love the child and that the Down Syndrome was not nearly as terrifying in REAL life to raise a child with Down Syndrome as they havd thought it would be. as it was when they thought it was during pregnancy. to ME, that is another reason why i find the 90 percent number scary. People panic when they hear the news, i do think many people could be amazing parents and love the child more than they realize, if they didn't act in panic. that is all i am saying. There should be more counseling and education when a "risk factor" is named or a "diagnosis is given".

On a side note, there is a long waiting list for families wanting to adopt down syndrome children. people never realize that fact, as well.

Do I think 90 percent being aborted is sad? HELL YES because of all the reasons i mentioned above. i could care less if you guys disagree.

This wasn't an 'abortion" debate. it was about the REASONS why that 90 percent is so high is what makes me sad.

A) No, it would be unethical (or in some cases, illegal, depending on how far along the pregnancy is) for a doctor to abort a fetus that is SUSPECTED of having Down Syndrome.

Source for you assertion that there is a waiting list of people who want to adopt children with Down Syndrome?

unethical? hmmm...Not sure how to respond that you think it is UNETHICAL to abort a "suspected" down syndome baby, but completely different to abort one once you are "diagnosed". Either you think abortion is fine, or you don't in that situation.

RedheadBaker said:

Your Washington Times source is 8 years old. How do you know that's still accurate?

This is from your BabyCenter "source" (FYI, BabyCenter is not a source):

"My name is Stephanie Thompson. I am the Assistant Director of the National Down Syndrome Adoption Network. Robin Steele is the Director. Robin is the birth parent contact, I am the adoptive parent contact.
There is NO WAITING LIST for children with Down syndrome in the United States."

https://www.downsyndromeprenataltesting.com/one-of-the-most-compassionate-missions-in-the-united-states/

If you read THIS article, you will realize they don't call it a "waiting list" they call it a REGISTRY as to not scare people off who are already scared off from being on so many other waiting lists. That article explains it more clearly.

for those who don't want to click and read the whole article, here is the post

This is why the NDSAN hopes to make clear that it maintains a registry, not a “waiting list.” That phrase can have unintended, negative associations. For an expectant mother, a “waiting list” may suggest she would have to wait to place her child. For families interested in adopting, a “waiting list” may suggest they have to get in line to wait for a child, when that is not the case.

on a side note:

Why exactly do you WANT to prove me wrong so bad? Why do you WANT it to appear that these children are unwanted by others? I ask you that. I posted something to encourage people that there are alot of families who would like these chidlren and you seem hellbent to prove me wrong as I think people forget that there is a possible alternative if someone doesn't feel they can raise a child with down syndrome?!?

toconnor3 · June 2014

At 19 I q as told my son had a higher risk of ds due to test results. We opted for an amnio and the results were grim there as well. My ob has a child with ds and was very supportive and helped us prepare for our baby in case he was birn with ds. I was also working in a care facility for adults with disabilities so I kinda knew what to look forward to but there were a lot of fears still. Adults and babies are very different. I stressed and worried and I won't lie I cried a lot as well. On june 14th 2010 I gave birth to a son who does not have down syndrome. He has many other health problems, but you'd never know it. He is now 4 and I'm working on baby no. 3. We decided to go ahead with the blood work next wednesday to screen this child too. Long story short... results can be misleading. Its no guarantee you will deliver a baby with downs or anything thing else "wrong" (as some of society would classify) with your baby. All babys are blessings and its sad that some doctors see handicaps and disabilities as flaws. They are not special needs, just extra love and there is nothing wrong with extra love.

krgriffin26 · June 2014

I'm lurking but just want to say that I also has markers in my blood test that came back with a 1:120 chance of DS. I had the blood test done at 16w. DH and I went to the ultrasound with a high risk MFM Dr and all came back clear. We chose after that to not continue with any amnio or blood testing and are considered all clear and low risk. We wouldn't have done anything about the pregnancy even if our little girl did have it.

We chose to go to the ultrasound because if they could tell us early that she has DS we wanted to get educated. We wanted to have a counselor and be able to do research and prepare. That is all. I just wanted to point out that testing doesn't mean invasive or dangerous actions have to taken. I hope your LO is beautiful and has a happy life.

MaPetiteFamille · July 2014

msspeedymarie said:
poptart109 said:
My dr told me the same- that DS was "positive for Downs" and suggested we terminate. Which to me was not an option. Our odds were 1:220. We opted for a level 2 u/s to check for markers and after not finding any declined the amnio. DS is perfectly normal. We not only switched drs for this pregnancy but opted out of the AFP test. We just went right for the nt scan.

1:120 is higher than normal, but by no means a certainty. I don't know if I'd even recommend the Mat21 or Harmony type test for you, as those have an accuracy of 99%, so they wouldn't really reduce your risk, since your risk is already about 1% (if the Mat21 said you were clear, you'd still have a 1% risk, since the test is 99% accurate).

That really isn't accurate. 1:120 represents the risk that the fetus has DS. It represents a little bit less than a 1% chance that the fetus has DS. It provides no information regarding whether or not YOUR particular fetus is that 1 out of 120 affected by DS.

The cell-free DNA tests have 99% sensitivity for DS. That means they correctly identify 99% of fetuses affected with DS. This is NOT equivalent to a 1% risk for DS. These tests offer FAR more information than a simple risk ratio and are much more relevant to YOUR child.

ETA: Sorry, just realized this is an old thread. I'll keep my comment up just in case other people are searching for information on the DNA tests.

bwalker51 · July 2014

If the baby were to have downs, the only thing I would be concerned about if it were me was a heart defect. I have a niece with downs and a sister with Spina Bifida so I know firsthand what happens with each immediately after birth. I opted out of having any of the testing done with my 1st and again with this pregnancy. It helps to have a level 2 ultrasound to confirm the anatomy is all good in order to prepare for any additional medical care but there are so many false positives with the screening tests. You will be so blessed either way it turns out

Cchewning · July 2014

If you choose to do an amnio just so you can feel prepared you can request to delay it until further along, so if it happens to induce labor the baby will be able to survive. That is what we had decided to do regarding other issues that were seen in the 20 week scan.

jneden · July 2014

Someone just posted a similar result last week and this is what I said.....

I had a similar situation with my first pregnancy. I was so upset. After doing some research I found out that an increased risk result is kind of common and most of the time that baby is perfectly fine. Its completely normal to be sad and to worry but remember that you don't have definite results yet. Try to relax until you get the results back. Praying that your baby is perfectly healthy! Also, look at your ultrasound pictures from when they did the scan. Do you see evidence of a nasal bone? A lot of DS babies don't have a visible nasal bone at that scan so if you see one its another sign that everything is okay. I wasn't sure what it was supposed to look like so I Googled it and sure enough my little girl had a visible one which made me feel a little better!!

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OB called and told me I was positive for down syndrome

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