Maternal & Child Community
Elevated risk of Down Syndrome - PLEASE HELP!
About This Community:

This patient support community is for discussions relating to breast feeding, childhood disease, colic, child discipline, immunization, lactation, newborn care, post partum depression, Sudden Infant Death Syndrome (SIDS), and special needs children.

Font Size:
A
A
A
Background:
Blank
Blank
Blank
Blank Blank

Elevated risk of Down Syndrome - PLEASE HELP!

My doctor just called me with the results of my AFP test I had done on Thursday.  He said is showed an elevated risk of Down Syndrome for my age.  He said that normal is 1 in 690 and mine was 1 in 185.  I know the chances don't seem great, but I have been crying ever since he called.   I was not expecting this at all.  He did say that they mixed up my due.  They figured it with a due date of August 12 and my real date is August 21.  He said it would change the results, but he didn't know if it would make it better or worse.  I told him I would not do an amino, but would see a high risk doc for a level II ultrasound.  He is supposed to call me tomorrow with the new results after the correct due date is figured.  Has anyone had experiences like this?  I want to hear all outcomes that have been experienced.  
Related Discussions
16 Comments Post a Comment
Blank
Avatar_n_tn
relax
you probably have a greater chance of getting in a car accident and do you cry and worry about that
seriously - those are some pretty low odds!!

your level II will tell youmore
good luck
Blank
150937_tn?1235947480
i have a good friend who just delivered a healthy baby boy after receiving similar #'s.  she was stressed out the last 4 months of her pregnancy.  it's not a very accurate test, and i am so sorry you are stressing about it.   think positive, i'm sure everything will be fine.  good luck
Blank
184342_tn?1282592350
A very good friend of mine had that happen with his first child...  his wifes tests came back with the elevated levels-  he is a VERY HEALTHY AND NORMAL little boy- about 6 now...  and they have 3 kids now total!!  So when I got pregnant with my daughter I skipped that test, I decided that I wouldn't trust the results anyway...  I will keep you in my prayers, I know it must be hard hearing that news, but in my experience, the one person I did know that got those results, everything was wonderful in the end!!  Hang in there-  the level II us is a great idea!!

Blank
Avatar_n_tn
no advice or anything. but good luck. i didnt have any down syndrome testing done at all, and wont. because we (me and my hubby) decided that we would keep our baby no matter what. so good luck
Blank
178239_tn?1277409091
There are a lot of factors that raise that percentage. If you are over 35, they raise the risk tremendously. That's just a plugged in #. Before I mc I read there are so many factors that would put me in the high probability group that I didn't bother. All it would do is worry me and upset me. Which it obviously is doing to you. When I mc(at 41)they tested the baby and the placenta and there were NO genetic defects of any kind. Perfectly normal, size, developement everything. Wait for the level II u/s and see. Chances are it's much ado about nothing. :)
Blank
130047_tn?1210285144
is it too late to try the test again?  Are you beyond 18 weeks?  There are alot of false positives and if they calculated it using the wrong due date, it would skew the results.  Are you over 35?
Blank
167_tn?1374177417
Hi, okay so if they made a mistake and you were farther along according to dates than you really are, that is why. Relax. It happened to me. They told me they may have done the test too early so I took the test a week or so later and it was fine. I'm sure that's why they got the results they did. It's fine, I could bet on it!

PS-I FELT THE BABY KICK TODAY SEVERAL TIMES!!!! It's SO AWESOME!!!
Blank
Avatar_n_tn
Definitely remain calm.  I had the same situation happen to me.. kind of.  I had the negative blood screen, but during my ultrasound, the measurements were abnormal.  I am advanced maternal age (35) so taht upped my odds to begin with.  Then, on the ultrasound, they found abnormal nuchal thickening and a gap between teh toes.  The nuchal thickening is a significant factor for downs. My husband and I were distraught.  I cried so many tears.  My odds for having a baby with Downs went down to like 1:16.  Because I had a negative blood screen, my odds equaled out to be 1:150.  Odds of miscarriage by amnio are 1:200 so my doctor suggested we get the amnio, which we did.  (the procedure is horrible... its uncomfortable, scary, and borderline painful so if you dont want to have it, I dont suggest it).  

needless to say, I returned all of the things we had bought for the baby because I was convinced it was bringing us bad luck.  I cried and was severely depressed for the entire time waiting for my results.

Long story short, I now have a two week old healthy, happy, non-Downs, beautiful baby boy.  

Dont get all hyped up with the test... if you were to get an abnormal result, the blood test is where you would want it because historically, they are known to throw off alot of false positives.  Get the ultrasound, Im sure taht will put your mind at risk.  Good luck!
Blank
Avatar_f_tn
These other ladies are right, there are a lot of false positives! I know it's practicaly impossible not not worry, but try to. Take a bath, go out and eat at your fav. place, go to a movie,etc. Just try and have a good time. Do anything you can to get your mind off of it. I know it's easier said than done!!
I wish you all the best and I know that either way, everything will be fine!
You are going to love that ultrasound! They are awesome! Let us know how it turns out!
Blank
Avatar_n_tn
wow!! lilcountriegal,
that was defn. encouraging to hear and thx for sharing.
I am very concerned (a lill less now, I guess) from my own side because my doc delivered a similar news to me last wk.
my NT is 2.7 mm and I have a 1:115 risk ratio. I am 34 and my blood res. have not yet come but the doc went ahead and suggested that I do CVS OR Amnio and I have to decide which one right now.
They say both have the same risk of miscarriage 1:200 even though I have been hearing different feedback from others.
Some say CVS is higher end while others say it is same but CVS has other -ve effects of having a baby with some deficiency like few less fingers OR one ear etc etc
I am very depressed about this whole thing and on top of this the probability factors just kill me....
Both my & my husband believe that it is not such a good idea to have a baby with DS/mentally retarded (more so 'cause of the pain to the baby for the rest of his life)....
I read here somewhere that the blood tests "drastically" altered the risk ratios to one but can anyone else please share some feedback about CVS , Amnio OR general

Blank
Avatar_f_tn
Thank you all so much for your feedback.  It really has made me feel better.  I am trying not to worry, but I didn't sleep at all last night.  I am going to go crazy waiting for my doctor to call me today.  I know the odds are not very high that there is a problem, but I am still scared.  I am an early childhood teacher and work with children with special needs all the time, but when you hear it about your own child it is different.  I keep thinking "how will we tell our family, how can I work and send this child to daycare, how will my 3 year old adjust?"  I will keep you updated.  Thanks again for the feedback.
Blank
164559_tn?1233711618
My guess is that your baby is absolutely fine.  Those are still pretty low odd and they will probaby lower again after you have your us.

Regarding you worrying about how you would cope with a special needs child, I believe God gives grace and strength when needed and that you will be a wonderful set of parents to this baby even if he/she has problems.

I think you will get great news from your us.
Blank
177988_tn?1266802499
I am 24 and questioning whether or not to get this testing done.  My doctor seemed pretty intent on it and it didn't feel like much of an option (the nurse did mention once that I didn't have ot have it done).  I just read this stuff and I don't want another reason to worry.  Is there any REAL need for me to get this testing done?  I am going to love my baby no matter how he or she comes out and I don't think I need another reason to stress.  What do you think?  
Blank
164559_tn?1233711618
Have the testing done if you feel it is necessary.

I had it done with my son, and it lowered my odds from 1in 75 to 1in1500 so it gave me peace of mind.

I have had it done with this baby and will get the results when I visit the specialist on the 30th.  I also would carry the baby no matter what, but would like to be able to prepare family and friends if the baby was going to have special needs.  

It is a very personal choice and if you don't want it, be firm with your doctor.  After all YOU are the MUMMY.
Blank
Avatar_n_tn
please remember that 30 percent of those are wrong..  I have opted not to have it done for that reason.   I will take whatever god throws at me...  
Blank
Avatar_n_tn
My experience from having done that test (in addition to anatomy level 2 u/s and an amnio) is that the screening blood test results do vary and are not very accurate so why women often go on to have other tests. How old are you and do you have other risk factors to add to your test fndings to persuade you do more like an amnio or CVS, though latter happens early at week 14? For me I'm 36, so I did the screening test but was leaning toward doing an amnio regardless b/c I knew the screening tests weren't as accurate. I did get #s not as good as I hoped which then definetely made me do the amnio despite my concern for m/c as I had 3 m/cs prior to this pregnancy. In addition to due date, weight changes that odds # too. I was told it's based on average weight of 150 pounds, and I weighed more at that point so they adjusted it and I got a slightly lower # but still did the amnio. My amnio and anatomy u/s were fine, which made me feel better though obviously if I had a m/c from it I'd be sorry that I chose to do it. So, keep in mind those levels do vary (as my other friends with similar subvalues as me got better or worse odds than I did). My younger friend who had no risk factors got a much worse # than I did on screening and she had a normal amnio, but my older friends got better screening #s so didn't do the amnio. I know it's confusing but keep it all in perspective in terms of your risk factors in general and do an level 2 u/s at least before worrying too much.
Blank
Post a Comment
To
Blank
Weight Tracker
Weight Tracker
Start Tracking Now
Maternal & Child Community Resources
RSS Expert Activity
242532_tn?1269553979
Blank
Emotional Eating: What Your Closet ...
Jul 09 by Roger Gould, M.D.Blank
242532_tn?1269553979
Blank
This is Driving Your Emotional Eati...
Jul 02 by Roger Gould, M.D.Blank
5856747_tn?1403352282
Blank
Sleep Apnoea
Jun 28 by Andrew John Rynne, MDBlank
Top Children's Health Answerers
13167_tn?1327197724
Blank
RockRose
Austin, TX
134578_tn?1404951303
Blank
AnnieBrooke
OR
4268628_tn?1375044776
Blank
Flickan
Monroe, WA
Avatar_f_tn
Blank
arlandonbloom
CO
Avatar_f_tn
Blank
Bsmom09
1527510_tn?1392304944
Blank
Carly1306
United Kingdom