Getting the Downs Syndrome Test.

Sarah - posted on 01/10/2011 ( 96 moms have responded )

5,465

31

344

There's a thread on the Welcome page about this, so I thought I'd pose the question here for debate rather than advice!

Did you get the Downs Test?

I didn't with my first, but I did with my 2nd and I regret getting it!

It came back just in the high risk category, I declined the amnio in the end because of the risk of miscarriage, and I knew I wouldn't abort, so all I achieved by getting the test was stressing myself out and worrying all the way through my pregnancy.

Some people (like the person who kind of convinced to take the test with my youngest) would say it's best to be prepared, others like me, would rather not have spent the time worrying.

Your thoughts?

MOST HELPFUL POSTS

Sara - posted on 01/11/2011

9,313

50

586

Haley, if you're going to "debate", then you need to calm down a little bit. Telling people they're wrong and calling them names is not debating. Present facts to counter other people's facts, that's debating...not putting other people down and telling them they don't know what they're talking about. If you can't be respectful to those around you, maybe you should take a break from this discussion.

Sara B.
DM Mod

Tracey - posted on 01/11/2011

1,094

2

58

How many of you who criticise those who would abort have, or live with a downs / disabled child? Until you know what it's like you shouldn't be putting others down.

Kari - posted on 08/17/2011

67

29

1

Well I am a mom of a DS daughter..I know all about the rewards and some difficulties of having a DS child. I didnt have the prepared knowledge that would have been wonderful instead of being thrown into complete madness by the neonatologist saying Oh she has 3 holes in her heart and DS and will be in the NICU for an unspecified amount of time..You never know what you can handle until you are in that situation. I have 3 daughters total and believe me my older two do not receive any less than my best as a mother. Lily needs a lil more help here and there but by no means does she come first and all my other family members come secondary to her needs.. I am very ashamed to have come across all the negative comments about DS in this thread. You are only afraid of what you dont understand ... If any of you that would abort a DS baby ever met Lily you would def change your mind. She is a typical 3 yr old lil girl that loves to dance and give hugs and kisses and loves her sisters daddy and Mother very very much..does the future scare me? Of course it does but it also scares me with my older girls . Ask yourself this if one of your kids suddenly came down with Luekemia or Cancer or were involved in an accident would you just leave them at the hospital so they could care for that child because YOU cant handle it? NO YOU WOULDNT.. you would get online and google the hell out of the diagnosis to educate yourself..same thing as what I do with my Lily. BTW the adoption list for DS babies is 2 yrs waiting for people REQUESTING DS BABIES OVER HEALTHY NORMAL BABIES..so adoption would not be a problem AT ALL.. Dont assume the worst when something isnt as you planned or imagined for yourself..Go to my profile and take a look at my sweet Lily and that will stick in your memory forever..God will give you what you can handle, we cannot argue with what is His plan that will just lead you to a huge heartbreak.. If you dont think DS babies have the choice of living versus being aborted out of fear the next person with DS you meet please tell them they are an a abomination and that they shouldnt be on earth at all. This has really gotten my hackles up if you cannot tell by my REPLY to this idiotic thread..tests are there for those who want to be prepared thats why they are optional...anyone has any questions just blast one my way

Caitlin - posted on 01/10/2011

1,915

5

172

Haley - I would abort a child if the ultrasound +amnio said there was downs. I'm not a horrible person (I don`t think). I worked with kids with dissabilities, and they are great, but I'M NOT strong enough to deal with that . I have 2 other kids to think about as well. I resent your implication that becasue I consider the long term ramifications for my family, that I am heartless. I wouldn't be able to give all my chidlren what they deserved and i'm definately not giving a downs syndrome child up for adoption because they'd be stuck in group homes for the rest of their lives becasue people want to adopt a healthy child for the most part. Of course, if my baby was born with downs, i'd deal, but if I knew before.. I dunno..

This conversation has been closed to further comments

96 Comments

View replies by

Cheryl - posted on 12/22/2011

8

5

0

wow: I was reading through this posting and alot of mothers felt the same way I did and then there are some that didn't and that is ok! That is what the world is made up from and what makes the world go round! but the one that stuck out to me and made me what to educate you instead of yell at you was LaCi Who? . For you to say the things you did on here is what put a label on DS children and adults. They are the most loving and giving people and if the world was made up from just 80 to 90 percent of DS PEOPLE this world would be a better place. In case you haven't noticed by my words I am the PROUD mother of a 17 month old princess who happens to have DS. She is the light of everyones' life that comes in contact with her. Sure at first when I found out, I was like alot of people scared and didn't know what I was going to do. Did my research,mourned for the typical child I was not going to have. Then I got my act together and did what was best for her. Please read up before you knock someone who is different.
signed
Elizabeth's PROUD Mother.

Kellie - posted on 08/18/2011

1,994

8

175

I had the test. Then I had the Amnio.

I had the Amnio because I quite simply, couldn't go the rest of the pregnancy wondering. I like to be prepared.

Thankfully it came back A OK and my daughter was cleared. Would I have Terminated if it was found she was Downs? I am unsure. Do I think I would have loved her any less? Nope not at all, however there are many things to consider when having a child with Downs and I would have weighed the pros and cons carefully and absolutely would have considered Terminating.

[deleted account]

We don't test for it in Ireland, unless we ask for it or sugggested by a doctor.



For me i would just not do it .I would want to meet my baby face to face ,hold them like i did my other two girls and deal with things then at the birth.



Having DS is okay.There still my baby and i will treat that little baby with the same love, respect and cherish them the same as i do my other children.

It does not worry me or frighten me if possibably a child of mine could have DS.



If the enter the world with it.So be it.There always going to be my perfect little child..No matter what.

I would then seek all information that is needed in raising a child with special needs.I make it sound so simple but other than the joy of a new life, i am sure it is also a very stressful and uncertain time in ones life to..

I do believe we can and do cope, with what life gives to us.



As a parent anyway there are difficult times and great times, that outweigh those difficult times.Thats all apart of life.

[deleted account]

Hi Kari - it is good to hear what you say about your lovely daughter and how she is like any other 3 year old. Very encouraging... and thought provoking. I had CVS for all 3 of my kids, but I've never met a DS kid and couldn't have imagined what it was really like.

Good luck.

But I don't agree with the bit about God giving you what you can handle - I believe DS is caused by chromosonal disorder, not due to meddling by an interventionist superbeing who is somehow testing you.

Peggy - posted on 02/02/2011

193

59

0

Sara H.. that is awful that a doctor could be so heartless.. and if was me I would have found a new doc ASAP.. a friend of mine was told off of an U/S that her son was going to have a club foot and was basically given options of an abortion .. which was never once did she consider it. Yes she cried.. who wouldn't if your told something could be wrong with your child?.. and no he doesnt have a club foot.

Peggy - posted on 02/02/2011

193

59

0

Tracey.. I can tell you my step sister has a baby with full on CP... can not walk, talk, ect..and he is now 12 yrs old. I used to care for a baby with DS.. granted it wasnt a severe case but she did have it.. so YES when I say I find it sickening that someone would abort their child over DS, I do have first hand knowledge of what it is like.

Peggy - posted on 02/02/2011

193

59

0

I am pregnant at the moment with my 3rd child. I will be 41 next week and my baby is due in July. I didnt get the DS testing done because of the fact of having false positives. And with an Amnio there is a chance of miscarriage. I went and talked to a Genetics Counselor and got true and accurate info on the tests. Yes being older does raise the risk at having a DS baby but only 2%.. there is still a 98% chance that there wont be any problems. I know someone who had a DS baby at the age of 18.. things happen, its out of our hands. I have done other ultrasounds to look at the heart etc. My husband and I passed on the testing because it wouldnt make a difference to us anyways.. we are just thankful God has blessed us with having a baby (we have been trying for almost 2 yrs.. it will be his first child) and for the fact the test isnt 100%, why take a change to have a false positive and turn what is supposed to be a happy time into a sad time when everything could turn out okay anyways. My Genetics Counselor and Doctor were fine with it.. they never once tried to talk us into doing it.. they respected the reasons of why we were passing on it. Yes some will abort for very SELFISH reasons... because what if something happened to their "perfect child" would they not love them the same as they did before?.. Your child is your child.. you love them and care for them UNCONDITIONALLY!!

[deleted account]

As a provider of the nt and morphology scan I can say my counseling is open and non judgmental. In terms of accuracy the Nuchal us is by far the best screening test we have ever had for picking up chromosomal problems mainly downs syndrome. There are also other advantages including confirming the pregnancy is alive, picking up twins, getting a pointer for heart defects in the baby and the list goes on. I personally had the test but when I talk to my patients in pre test counseling I discourage them to have the invasive testing if they wud not interrupt the pregnancy. I also make sure they undrstand the false positive and false negative rates. Age is NOT an issue as most DS babies are infact born to younger mothers as they simply have more children...if u were to have one scan to pick up DS then it is Nuchal with a pickup rate of 90% as opposed to the 20 week morphology scan with a pick up of 40-50% at best!

Amanda - posted on 01/20/2011

83

29

4

i myself went back and forth with this one myself bcuz i knew we wouldnt abort or put her up for adoption so really wht was the point like you said but then i thought i could take classes and be better prepared to take care of her but then like you said id just worry the whole time. then a doctor himself said it was pointless to do bcuz most of the test come back high risk for no reason at all so no i never got the test done like a doctor said its pointless

[deleted account]

I get why some women would wanna know, but me personally, I wouldn't get it done. Either way, it's my child nd I'd love it regardless. Yeh, living with a DS child is obviously gonna be harder, but then that's life. Yu do what yu gotta do.

Nicole - posted on 01/18/2011

64

2

1

no im preg with my forth and refused all of them as it wouldnt make a diff to me i dont believe in abortions and also my doc said they not even accurate.

[deleted account]

if its not in your family and if you're not over 30 then i wouldn't bother sometimes these tests can give false positives just like they can give false negatives

Louise - posted on 01/12/2011

5,429

69

2322

For my first two children I did not have the test because I knew that no matter what I was going to have those children. I was 21 with my son and 24 with my other son. Then aged 38 I did have the test and reason for that was i felt that at nearly pushing 40 I wanted to know because if this baby was down syndrome then it would more than likely need full time care and i felt that I would be leaving my older children to care for him/her when I got into my 70's. I really did not want my children to turn into adult carers because mum had decided to go through with the pregnancy. It would of torn me apart if the test came back positive and I really hand on heart do not know if I could of gone through with a termination but I know my husband would of pressured me to. I can not see the point of having these tests if you are not going to act upon them, like you I feel the stress we put our selves through having a child these days with tests for alsorts is unnecessary.

Tracey - posted on 01/12/2011

1,094

2

58

This might interest you.

www.dailymail.co.uk/health/article-1346329/Downs-syndrome-blood-check-end-invasive-test.html

[deleted account]

I had an ultrasound on Monday and the tech told me one of the latest ways of detecting DS is to look at the structure of the nasal bone. She looked at that along with the other things on the ultrasound checklist. Seems like a pretty non-invasive alternative to the amnio, unless you are very high risk.

I didn't/wouldn't have the tests done. It's just not something that matters to me. I know that many of you will disagree with this, but I believe God will only give us what we can handle. If He gives me a downs baby, He must know that I have the ability to handle the situation, or He will give me that ability.

So faith aside, I do see where Caitlin, Laci and the rest of you are coming from. I disagree, but can respect that position, because you are doing what you think is best for your family. There is nothing heartless about considering all the options and choosing the one that you feel is best for your entire family. I just have a different view about what is best for my family, because of my beliefs.

Kind of on the opposite end of this...I have a friend who has a child with a chromosomal disorder. She didn't want the tests or amnio, because she wouldn't have aborted anyway. But the baby was not measuring proportionally in the ultrasounds, so she was sent to a specialist. The specialist said the baby either had downs or was a dwarf (both wrong) and of course she reacted by tearing up. He grabbed her face and said, "Young girl, stop crying! That's why you should have gotten the testing done earlier, so you could have aborted!" THAT is a heartless reaction. The little girl is now three, and is the light of her parents' life.

[deleted account]

Me neither Dana.... and it is funny. :)

I'm not sure what tests they ran on me. How bad is that? I'm 'pretty' sure we didn't though cuz I don't remember any blood draws other than early pregnancy... ??

Sara - posted on 01/11/2011

9,313

50

586

Well, until then we can satisfy ourselves with whirled peas. I'll take what I can get.

Rosie - posted on 01/11/2011

8,657

30

321

the way you're acting IS funny to me. can't help it. normally i would think that people acting that way would be irritating and childish, but i'm turning a new leaf!!! i have to find humor in things like that now! :)

Ez - posted on 01/11/2011

6,569

25

237

I had the NT bloods and u/s done at 12 weeks. My daughter's father had already bailed, so I was preparing to be a single mother. I needed to know what I was in for, but I would not have aborted.

Mary - posted on 01/11/2011

3,348

31

123

Um, Haley, I think you must be confusing the 1st trimester screening with the amnio that would be done IF those tests indicated a high probability of Down's. The amnio IS 99% accurate in diagnosing chromosomal disorders.

LaCi - posted on 01/11/2011

3,361

3

171

Apparently Haley is under the impression that 99%=infallible.

It's also your opinion that it's selfish to abort a defective child. I'm sure it's also your opinion that it's heartless for me to call a DS child defective, but it is in fact a defect. A mistake of nature.

User - posted on 01/11/2011

119

0

8

Really Caitlin. Get some facts from an actual doctor. My friend had it done and it said her baby had it. She ended up having the baby and guess what,baby didn't have anything wrong with her.

Esther - posted on 01/11/2011

3,513

32

144

I chose not to have the test done. I had had a miscarriage before my succesful pregnancy with my son and I didn't want to take the risk of the amnio when regardless of the results I would have gone ahead with the pregnancy anyway. The amnio and the results from it are done so far into the pregnancy that to me an abortion wouldn't have been an option even if I had theoretically been up for it. I also really didn't need another thing to worry about had the test come back indicating a problem. I completely understand and respect Caitlin's position though.

Joanna - posted on 01/11/2011

2,096

19

137

Thinking about your existing family is selfish? The women who would abort are doing so to keep up a quality of life for the children they already have. Pretty selfless to me.

And for me, I didn't and won't have thectests. I don't know how capable of raising a child with DS I am, but I would like to find out.

User - posted on 01/11/2011

119

0

8

There wasn't a personal attack. Anyways I agree Jane. Why bother with having the test done when it's usually wrong. Why worry. You should love your child no matter what and if you abort because the child has downs thats awfully selfish.

Tracey - posted on 01/11/2011

1,094

2

58

I was advised not to have the test due to my history of miscarriage. However I would abort a baby with downs or any serious disability because I can't raise another disabled child mentally, physically or financially.

[deleted account]

For both my pregnancies I declined the triple blood-test which includes testing for DS. I would never abort a baby because it may have DS and would never have an amnio because of the risk of miscarriage.

Most women here are not offered a nuchal fold scan on the NHS, although it is available privately. I couldn't say if I would have this scan if the NHS offered it as a standard because I do love seeing my baby on the screen, so that would bias me.

Sarah - posted on 01/11/2011

5,465

31

344

I think the problem with my situation, is that the risk of miscarriage from the amnio would have been far greater than the risk of DS.

My blood test came back as 1 in 250 chance, which was just into the high risk category.....the risks of miscarriage from an amnio are about 1 in 100 I think.

I think if I'd wanted the nuchal scan, I would have had to pay for it.......which we couldn't afford.

I wasn't willing to risk an amnio in my case, but maybe I would have felt differently if the odds of the baby having DS were higher than the risk of miscarriage.

[deleted account]

When some of you have said the tests are unreliable, I assume you're talking about the nuchal translucency? That's the one you do pretty early in the pregnancy (10-12 weeks) and is just an ultrasound combined with a bloodtest. You get a probability of downs syndrome, but not an absolute guaranteed yes or no. The other tests like the CVS and the amnio which happen later (maybe 14-18 weeks) are not unreliable - they look at the child's chromosones so it should be pretty much a rock solid answer re Downs Syndrome.

The problem with the amnio especially is that the result can take 2-3 weeks, so you are getting up towards the 20 week time, which makes a termination very unpleasant (and from what some of you have said, it may mean you can't get a termination at all in your area).

[deleted account]

I had the combined blood test and nuchal translucency ultrasound with my first because I have a cousin with Downs. I wanted to know so I could be prepared for any risk. I don't know whether I would have gone on for amnio if it had come back high risk, we never had to pursue that.



I had it tested again with my second as being a surprise, unplanned baby so close to my first (will be 18 months between them, if baby comes soon, 2 days overdue currently) I needed to consider all aspects of impact having a baby with Downs or another chromosomal disorder would have on our family. If it had come back high risk, I probably would have gone on to have an amnio and if that came back positive I definitely would have considered terminating the pregnancy. I am not exactly a young mother and have to consider how much I can really offer a high needs child; I also have another child to think about, I would have to consider the impact of having two children under two, one with special needs and what that would mean for both of them in terms of quality of life. As it is, this pregnancy came back low risk for chromosomal abnormalities as well, but the ultrasound did pick up a placental abnormality so we got a whole new kettle of fish to be concerned about.

Becky - posted on 01/10/2011

2,892

44

93

After our experience with being told that Zach had a small chance of having Down's, I've actually considered adopting a child with Down's. Does that make me crazy? :) I'm not really sure why that is, but it's something that's kind of been on my heart. I know it wouldn't be easy and it would be heartbreaking at times. But, working in adoptions, I've come across children with all sorts of disabilities and issues, and I will tell you, I could far better handle a child with Down's Syndrome than a child with Fetal Alcohol Spectrum Disorder or prenatal drug exposure or Reactive Attachment Disorder! It amazes me how many adoptive parents will accept those, but not a child with Down's Syndrome. The only thing that I would have a really hard time with and that discourages me from pursuing it right now is the reduced life expectancy. I don't know if I could handle being fairly certain that my child was going to die before I do.

Sarah - posted on 01/10/2011

628

36

19

I had the 12 week ultra sound test because i'm a paranoid person and i wanted to know everything was going well up until that point and the test is just part of that ultrasound, and i wouldn't have missed the ultra sound because i wanted the pictures lol :)
i wouldnt have aborted if she had down syndrome, people with down syndrome are so much kinder than regular people :) but i fully understand why people would abort in that situation. It must be extremely difficult to raise one!

Nicole - posted on 01/10/2011

736

6

98

No I didn't. The test was scarey and I wasn't in the high risk category.

If I was in the high risk category I would not take the test. I would never have an abortion, so the test wouldn't do much for me. If I knew I was in the high risk category I could prepare for the worst and hope for the best

Charlie - posted on 01/10/2011

11,203

111

409

We have had down syndrome children in our care , they were the most delightful , happy , wonderful children that came through our kindergarden .

A close friend of mine is also DS he is just the same , has a wonderful community of friends and enjoys his life to the full he lives in his own apartment in a complex with many other DS adults who all take care of themselves with minimal to no help , they go out and party , they work ( he works with the Rabbitohs ) enjoy a full social and love life .

Sarah - posted on 01/10/2011

1,499

10

41

I did not have the tests done with my son & I probably won't with my next pregnancy either. Knowing that these tests are not completely reliable, if something came up positive, I'd probably worry my entire pregnancy & not be able to enjoy it. That's the kind of person I am...I worry needlessly about everything, so I'd rather not add something else to the plate. I guess whatever happens, happens. Fortunately I was blessed with a very healthy little boy. :)

Stifler's - posted on 01/10/2011

15,141

154

604

The test is not to say whether or not they have it, it's the relative risk of having it. Raising a Downs Syndrome child is heartbreaking and they will always be dependent on you no matter what unless you palm them off to someone else. Even then when they're living in a group home you're still their power of attorney. I can see LaCi and Caitlin's point of view there.

Mrs. - posted on 01/10/2011

1,767

6

30

It's a personal choice. I totally respect a person knowing that a the risk of having a DS child and being aware that is not something they personally could handle at that point in their lives...it takes a lot of strength to know that and deal with what happens when you take those steps. Rough decision either way and it takes balls to know yourself well enough to know that this is not what you would want for your child.

Join Circle of Moms

Sign up for Circle of Moms and be a part of this community! Membership is just one click away.

Join Circle of Moms