Home » Pick Your Crowd » Moms of Special Needs Children » high risk for a down syndrome...anybody else??
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Hi!!!!
We just recently found out that i'm at high risk of having a baby with a down syndrome. I have no family history, neither does my husband of such things...;( i'm 22 years old...and really i don't understand how could i be at such high risk??...i know of few women who have been told same things and their babies turned out healthy.....so how much truth is in this ....does anyone know? should i be concerned? it's scary ....i've got 3.5 more months to worry about...it....i think i'll go crazy....so if anyone knows anything about this please reply to my message...... thank you... paula... aneke5@aol.com ? |
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The test for Down Syndrome has an unusal rate of false positives. I was also told that my daughter was at risk for being a Down Syndrome baby and the test was proven incorrect at her birth. Your doctor will probably do a special ultrasound to measure the skin folds of your baby while in the uterus. Down syndrome babies sometimes have extra skin and tissure in certain places. Try not to worry, but if you do have a Down's baby find out as much as you can about the syndrome and love your baby, he or she was chosen just for you!
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high risk??? how is that?? who told you???
trisomy is a 1 in 600 chance...in child bearing aged women.... if you're relying on the triple test (standard blood work) DON'T....stupid thing should be banned...too many false negatives...false positives if it's a worry...have an amnio....there are risks involved there...but you will have a definite answer...in about 10 days let us know! mom blessed with molly = |
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hi there! thank you for your answers...that's what my doctor told us...u're at a high risk.....test said is 1 in 167...doesn't look that high of a risk to me....but amnio is out of question...it's only 3 more months to go...till baby arrives....
one more time thanx for replying...;) = |
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Hi!
I wouldn't hold too much cloat to the first test results. It can be pretty scary when we hear results. My son turned out fine and it is true many false positives. Your doctor will work with you like they said. Just keep emotionally calm for the baby and not stress your nerves too much. Let us know how it goes and how you and the baby are after the birth. :O) dawn at: finallyfamilytime.com = |
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Hi
A lot of times the test are wrong. We had all the test done and no signs that anything was wrong and we had a baby boy w/ downs. I was 23 at the time. Down Syndrome is not hereditary. My little guy is 2 now and he is very high functioning. He does everything that a 2 year old should do. So if I were you I wouldn't worry to much. Just do some research so you can learn about DS. We knew nothing. Just remember that it is all in GODS hands and all you can do is pray.. Your in my prayers..... = |
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i have 8 weeks to go and dont know weither my baby girl has down syndrome, i came back high risk and decided not to have the amnio test as i did not want to take the chance of losing a baby i want so much, the doctors have done a scan every 2 weeks and have found nothing apart from the baby being a little small, my partner and i think it is because the dates dont add up and maybe also thats why the test came back high risk too. god only knows, we will just have to wait until she is born but no matter what we will love her just the same.
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I am currently 4 and a half months pregnant, am 30 years old, and have also been told I'm high risk (1 in 110). I'm going through hell at the moment because we can't decide whether to risk the Amniocentesis or not (chance of miscarriage is also 1 in 100). It's taken us over 2 years to get pregnant and we had fertility drugs to help. I have one blocked Fallopian tube so my chances of having another baby are slimmer than most. I'd love to know if you had a normal baby or not. Has anyone got any advice for me?
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i am in the same boat....i am 17 weeks pregnant and was informed last night that my screening test came back positive....i am scared....i have an appt with a genetic counselor in 2 days....i am only 27....first pregnancy....nothing has gone wrong yet during my pregnancy. i just constantly wonder...why me???
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i have a important question
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why are you at high risk?
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Hi there, I dont know if this will help and if you've had your baby yet, I didnt check the date, but congratulations. I just want to say that i have a brother with down syndrome and he is the best brother i could wish for. He is so loving and caring and gentle and everyone loves him. You have nothing to worry about. Sometimes its hard looking after him but It's all worth it when he gives me a hug and we spend time together, its just so fun and i love him so much, and I know you would love your child no matter what. I'm sorry I dont know why you would be at high risk, down syndrome is caused when the baby has an extra cell when it is formed as a foetus, so when clees are splitting into pairs there is one spare, this somehow causes down syndrome. My family had no history of it before my brother either, it just happens.
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hi there...
I've had the baby girl on feb.27 and as it turned out there's nothing wrong with her...she's perfect...thanks for all your messages... paula.. = |
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I dont think you should worry too much, I am 28 with the same problem. I asked my doctor for an amnio and everything turned out fine.
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Hi...I just got the results of my triple screen test back and I am in the high range (1 in 85) of my baby having downs syndrome. I am scared...I am 29 and this is my first baby....I have to go for an amnio...is this test accurate at all?
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Jana, if I were you I would first talk to your doctor. If you think about it, 1 in 85 chance is not a big chance, but im sure you are concerned and scared. If you are going to completly stress out till your baby is born you can get an amnio. Amnios are like 99% accurate I believe. But there is a risk of miscarriage with an amnio. (1 in 200) HAve you talked to your doctor yet? Did you have an ultra-sound?
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i also had blood test that came back as high risk for downs. i have a fifteen year old boy that has severe disabilities that are ndiagnosed. you can imagine my initial fear. i went on to have an amniocentesis test which thankfully showed that my babywas fine for all known chromosome abnamalities. i have since had 3 more children, all fine and healthy.
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there are many reasons for the test to come back as high risk. low weight gain, infection, womans disposition. try not to worry.
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hello,
how are you doing there,please mail me back i will help you out so let me know exactly what you need.mail:kye_mya@yahoo.com.i will be expecting you mail. cheers = |
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I'm 23 years old and my quad screen came back with increased risk for down's. My risk factor was 1:214, a regular u/s showed nothing, but a lvl 2 u/s showed an echogenic intracardiac focus and dialated kidneys (2.5 and 3.5 mm). So now my risk factor is something like 1:100. If you're considered high risk just from the quad screen, be aware that there are many many MANY false positives. Both the quad screen and u/s have a chance of being inaccurate, so the only way to know for sure if your baby has down's is to have an amnio. Chances are that your baby is perfectly fine. Try to relax and enjoy the rest of your pregnancy.
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Elle- I would like to talk to you sometime. My baby also has the 2 soft markers yours does. My triple screen test came back normal, but I still feel nervous. I go in on Monday for my 34 week ultrasound to see how the kidneys are still doing. I feel so worried.......my doctor said I have a 1 in 1000 chance of having a downs babybecause I am young and my test results are good.........I hate worrying!!
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Hi Kristin, it's comforting to see someone in the same situation, even though it's not that great of a situation. It's been such an emotional roller coaster from being excited about getting pregnant, then being sad and scared, also times of hope that everything will be alright...I hope that both of our babies will happy and healthy. If you want to talk, my email is chickybeef@yahoo.com. Good luck with your ultrasound!
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I just found out that I have a 1:217 chance of a down's baby...this is the first child for us...I am only 25...I am curious to know how high of a risk this really is. The doctor's office said a very high risk, but I want to know the absolute truth. I have no family history. I am healthy! I don't understand!
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First of all.........why are you at high risk? Blood test results, ultrasound findings? At your age, you should be around 1 in 1000 risk, but think about it......1 in 217 is still a very great chance of having a healthy baby. Ive seen a lot of people on this board say there risk is around 1 in 10. That is still a 90% chance of having a healthy baby.
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Did you have amino,It's very accurate, I fully understand we just
came from where you are I layed and cryed for 2mon.and felt like my world was being pulled out from under us,But this was all in vain because this child is a blessing,Ican promise" you that the love that you"ll feel will be awesome and MORE" = |
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If Ihad it to do all again I would'nt change a thing except the
time spent asking god why me"I guess everyboby is different" Just love your Baby'''''''''''''' = |
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Hi everyone. I just had a miscarriage at 15 weeks and was told my baby boy had Trisomy 21, which is Down's Syndrome. I am now 41 years old and if we were to get pg again, my chances would be 1/65 as I would be 42 when the baby is born. I don't know what we are going to do at this point. I don't know why, but I was shocked to find out that the baby had DS. I just didn't expect it, even at my age. This is my second miscarriage in 2 years. My doctor told me that 75% of all babies with Down's are usually miscarried but he was surprised I made it to 15 weeks. I guess they are normally lost earlier than that.
I know for sure I would not have Amnio or CVS as DH and I talked about it. The risk for m/c is not something we want and it would not make a difference to us anyway what the results were because we would not choose to terminate. I am thinking of having the Nuchal Translucency scan done if we do get pg again. I am just so sad though as my DH has no kids and I have an 18 year old son from my previous marriage. We would dearly like to have a child together. Has anyone miscarried a Down's child and gone on to have a child that was not Down's? I've heard that once you have a child with Down's that your chances are higher to have another one but I don't know if that applies to ones that are miscarried or not. Any advice is much appreciated as this is all new to me. = |
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Hi
I was hoping to get some feedback on Nuchal fold testing. I did the NT screen test at 11 weeks and my results were good, meaning my chances of chromosome abnormalities in the baby were low. When I went in for my second trimester ultrasound at 21 weeks my nuchal fold was measuring higher around 5mm, in certain images. The dr. said it could be the babies positioning that caused the increase in the fold but then again it could not. Has anyone experienced anything like this with the NT screen test? = |
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Hi! I also had the AFP test and it came back 1:85 for downs. I had a level II u/s and everything was measuing what it should be. they did say the baby was mesuing 5 days behind but they think it has to do with the cord entering the placenta and want me to do a followup u/s when I'm 31 weeks. After my u/s the doc told me my chances are now 1/170. I didn't do an animo since I was pretty comfertable with the u/s results.
Is a small baby a sign of DS. I'm trying not to worry but the thought is always there. What do youall think of my results??? = |
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I forgot to mention I'm 27 with two boys and now we are having a girl..
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I don't know whether or not you are high risk for a child with down syndrome but I do know it is possible I have a child with down syndrome and I was only 18 when I had him but he is the best thing that has ever happened to me
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please take that test with a grain of salt it is very inaccurate my mom worked for the down syndrome association and i dont know how many times people would call and tell her that they were consigered high risk and ended up with a " typical " child . i imagine it is concerning when a doctor someone you trust tells you this but really they are very unreliable tests.
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I just got the results of my integrated screen back at 1:25. I am 38 years old. My first child has autism. This doesn't even seem possible that I would have a child with DS as well. However, after much contemplation and prayer, I decided against the amnio as I've also had two miscarriages. I'm desperately looking to hear from some people who've had such low numbers and everything has turned out alright... I'm planning on expecting the worst but hoping for the best...
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Stephanie, there are SO MANY false positives with those screening tests. And If you think about it 1 in 25 is a pretty good chance your baby is healthy. Even 1 in 10 gives you a 90% chance of a healthy baby. Have you had any ultrasounds yet? They can measure the back of your baby's neck and also his nasel bone to see if they are larger than usual. I will pray for you and hope all goes well. Keep us posted.
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Thanks, Kristen. Yes, I have had 5 ultrasounds due to having had a subchorionic hematoma (which I'm also wondering if this could skew the test results at all?). The nuchal measurement came out normal at 1.4 but the adjusted moM value was 1.63 for some reason.
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Stephanie, I guess I am not sure what an adjusted moM is, but maybe you could let me know. Did they say anything in your ultrasound about your baby's nasal bone? did they see anything else unusual in your ultrasounds?
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Kristin, the MoM is the "multiple of the mean" which is confusing, but basically the true measure after being adjusted for maternal age, maternal weight, race and gestational age. It then comes up with a new adjusted number.
Thus far on my ultrasounds, they didn't find anything wrong, but said the last one at 15 weeks was too early to see any abnormalities in the heart or kidney so they'd have to do that later. No one mentioned anything about the nasal bone, but after all my research, I understand that is another good soft sign, as is femur length, finger length and many other things which I hope to get a reading on soon. I'll be scheduling my next ultrasound tomorrow... can't wait... = |
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Stephanie, at my 20 week ultrasound they told me my baby's kidneys were both dialted and said there was a spot of calcium on the heart. These are both soft signs of downs syndrome. At my 34 week ultrasound the spot on the heart was gone (they dont think it was there in the first place....it was a mistake) and only one kidney was dialated. My son was born May 22nd 8lbs 9oz 21 inches long......healthy baby. I felt like my pregnancy was ruined because all I did was stress out the whole time that something was wrong with our son. After he was born and we learned he was completly fine, I couldnt believe all the worry we went through. I know what you are going through and am sorry. It is so hard. Keep in touch and let me know how you are holding up. You have great chances of a healthy baby, just always keep that in mind :)
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I was toled the same thing with 2 of my children Harvey is 9 who i had at 27 and Helena is 3 now and I had her at 35. With both of those two they said my babies where having down syndrome and who not live long BULL they are normale and heathy, They had me meaning the docter so worry and sick 90 % of the time for no reason. Harvey is well and doing great in school Helena is also doing well in school has a matter of fact the are thinking about pulling her out of perschool and put her in per K because she is so smart.
But what if they where with down syndrome, are you going to love them any less, They are young people and they have come a long way with helping those with down syndrome today. Docter have been wrong so many times in the past. I would see another OB docter even if its 5th one dont stop at the 2ng docters get has much IFO has u can and good luck and best wishes DR = |
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If you ask me i dont think docter should talk about hige risks. What is to a age but a number hack i seen woman at 50 having babies if they can do it and want to who are we to say no. U have rich people doing it just because they have money its ok for them to have a baby but when you are 30 and up and not rich its wrong ^%^$#$@ ob docter thats why I love midwife better they dont judg you and treat you like a number tegs like ob's do
. = |
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hi everyone im really worried because mi result came back
from the blood test and they say im at high risk 1out of 54...im really scared ...know im going to take the amio test which im really scared cause i don't want to loose mi baby i was so happy about mi pregnancy and having a baby with the guy that i love know i have somethinhg to worry about..im 24 and four months pregnent and so worried please give me some feed back .! = |
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I am 29yrs old and this is my 4th pregnancy, i have had 3 healthy children with no complications. i received my results and they came back high risk for down syndrome ( 1:190 ) i couldnt believe it as i thought this would never happen to me. Yesterday i had an amnio and it wasnt that bad the worst part is waiting to find out the results. We had asked for a preliminary test (FISH) which would give a result in 48hrs, i am so nervous and have not been sleeping very well. The nurses and midwifes were very positive but i still cant help but wonder.
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Brandi i was wondering if you did an amnio as i thought they were quiet accurate in detecting down syndrome. I resently got a preliminary test back which said everything seems to be fine and im having a baby boy! We still have to wait for 2 weeks for all results but so far its all good news.
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Hi! I'm 17 weeks. I just had my u/s today because I had elevated AFP. No signs of nueral tube defects, but the femer (leg bone) is measuring small and one of the kidneys is blocked. Since these are soft signs of downs we had the amnio. Now it is just a wait and see game. It is good to hear that others have gone through this same thing. Scary, but all we can do is pray and let God take the lead.
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Hi! Just wanted to say that I had the same thing happen to me. My test came back high risk for Down's. The doctor said I was at 1.5% or 1:72 chance of having a Down's baby. I am 26. I went for my Level II ultrasound today and everything looked great, there were no soft markers detected. However, the doctor said that 50% of children with Down's do not have any soft markers, so I decided to do the Amnio. I knew I would worry the rest of my pregnancy if I did not. It was a little painful. But it was over quick, now I find out in 2 days. I am 18 weeks, this is my 2nd child. My daughter is perfectly healthy. I am worried as well, and I just want to know one way or the other.
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Nicci-hope all goes well. let us know. I
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I was at high risk as well. My specialist told me that my chances were 1 and 48. Which is extremly high. They asked me to do a amniocentises but i refused because of the risk of misscarriage. THen I had my daughter on march 15 of this year and she did not have downs syndrome. Although she was born with club feet and an umbilical hernia. she would of been and is still my pride and joy nomatter the outcome. So take it easy and good luck.
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I got my final results back i was high risk 1:190 and it all came back normal i think there is alot of false readings, i couldnt understand why me but it all was good in the end. So there is hope for others.
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Hey! Just wanted to give an update. I got my results back and the baby does not have Down Syndrome. We found out we are having a girl. OH, and Whittney. I was also born with clubfeet. It is not very common, whenever I tell people, most of them have never heard of it. Mine were pretty severe. I had to have a surgery at 7 months old, then I had another surgery at 8 years old because they began to turn in again. I am now 26, and you would not know that I was born that way if I didnt tell you. My feet do hurt a little more than others when I walk alot or stay on my feet all day. But other than that, I am fine. your daughter will be fine and she can do anything other children can do. Talk to yall later!
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hi, i am only 20 years old and 17 weeks pregnant with my first child. i have been told from my triple blood test that i am at high risk for downs by 1.40. i got the news over the phone yesterday and have not been able to get it out of my mind. there is no history of downs in either mine or my partners family and i cant understand how this can be?? wot is the percentage or chance of having a downs baby with 1.40?? somebody please ease my mind because i dont want the amnio test incase i lose my baby.
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Hi i have a down syndrome son who is 9 months now and he is beautiful. i had the ultrasound tests and i was in a low risk category 1 in 1000 all u/s showed everything was ok. but 24 hours after birth we got told he had downs i was so mad it wasnt picked up i couldnt see why it wasnt they're professionalls. it broke my heart and it hasnt got much easier but he is going great sitting crawling saying mum mum but about a month after he was born his blood test showed he had translocation which lead to my husband and i having a blood test because it CAN be inherited and it came back as i was a carrier i couldnt understand i am young healthy there is no family history on either side. that was nearly as hard to take in we have had app with genetic councellers and my case is very rare if any one else has experienced this i would love to hear from you !!!
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Lesley-
hi! I actually found out that my baby has a translocation(balanced) because I had a amnio done. The test was negative for downs but they said the chromosomes were abnormal. they said me and my husband need to get blood test done, which we have not done yet. This type of translocation they said usually does not cause any problems, except for when this baby grows up and wants children of her own, then she may have fertility problems. Mine is a piece of chromosome 1 broke and attached to chromosome 22. What was yours? Also did you have any misscarriages before you got pregnant. Most people with translocations have fertility problems. My first child was healthy and she is 5, then I had a miscarriage about a year ago and now I am 5 1/2 months pregnant with this one. Dont know if this helps at all but I am just learning about all this myself, I had never heard of it before until now. I am still worried about this baby, cause we dont know until she is born if everything is ok. = |
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Nicci! i have only one 21 but the other is on 18 its very weird i just wish i could find someone with the same make up as me yes i had 1 miscarry i still dont understand i am healthy normal they siad it happened to me at conception and because i was normal there was no need to do tests so we only found out after my son was born with down syndrome yes it broke my heart but i have learned to accept it of course i wish i had a normal baby but i would not change a thing abaot my son i love him for who he is he has no health problems thank god but i honestly dont know what i would have done if i found out when i was pregnent but im glad we didnt because he is still a human bein and we have so much fun.
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i am 24 and 22 weeks preg. with my second child. my husband and i were told that our new baby girl had echogenic foci and choroid plexus cysts they are both soft markers for down's...my genetic blood test had come back normal and my chances of downs were slim to none but now with this markers they increased ... my doctor recomended that we not do the amnio because after 20 weeks the chances of complications are high although he said if i was in my 18 week i shoud have done it. our baby has no other markers of down's. im freakin out does anyone else have something like this happen to them???please help.
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My husband and I recieved a high risk result last friday. We are both young 26 and 27, so it has come as a really nasty shock to us too! My understanding is that the test is designed to catch as many DS pregnancies as they can, and with that the rate of no affected pregnancies getting high risk results goes up too!! From my reading (mostly internet) 1 in 20 women will get a 'high risk' result and the large majority of 'high risk' pregnancies tend to produce babies that are not affected....thus in this situation we are more likley to have a baby that is fine rather than one with DS. What test did you have exactly? I had the Nuchal and Bloods...my nuchal (scan) was fine and bub had no signs of ds (nuchal neck measurement was normal 1.7mm, above around 2.5mm is considered high risk) but my bloods were waaayyy off! BHCG was 1.55mom (higher than 0.6 is considered high risk) and PAPP-A was 0.2 mom (below 0.4 considered high risk) And of course doctors are not all that reassuring are they, my doc ers more on the side of caution rather than positiveness wich I find really frustraiting. They paint a doom and gloom situation but what I worked out and asked the doc to confirm is that my risk was esitmated at 1:66...so what does that mean? It meas that I have a 1.5% chance of having a DS baby, or a 98.5% chance of having a NON-AFFECTED baby....when you put it that way it isn't as horrific as it sounds! Do you know what your risk was estimated at?? Have you been offered an amnio? How far along are you? Have you had a 18-20week scan? My doc says that this san will pick up up tto 90 (or higher)% of babies with DS through physical abnormalities and should give us a fair good idea if bub is ok or not....so we are waiting for this, its hard though cause im only almost 14 weeks now (5 week wait).
My husband and I are keeping the baby no matter what, we just couldn;t live with ourselves otherwise, but I respect any womens decision on this matter, no matter what it is. It's a tough situation with no easy or right answers, whatever is best for the people involved I think! It just makes me soooo sad, I love this baby sooo much and have been sooo excited up unitl now, now all I feel is sadness and fear! This should be a happy time and yet here I am crying bucket loads of tears! Now armed with the knowledge of how unreliable these tests can be, the false positive rate and the fact my risk should be low cause im still young, I wish i'd never had the test!!!!! They have nly been doing them here the last year, and before that given my results (no bloods done a year agon, just scans) I would have been sent happily on my way with no concerns for bub! Never again will I have this test, its too inaccurate, too many false positives and far too much worry is caused by it!!! Sorry for all the questions and ranting (im mad at the needlessness of the situation)! But it's nice to be able to share. Hope to hear from you soon! jodiww@gmail.com = |
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Vick your percentage is around 2.5% for having a child with downs, so your chance of having a non-dows baby is 97.5%.... the term 'high risk' is comparative, yes a 2.5% chance is high compared to a 0.05% risk (1:1800 is about the norm for a 20 year old) but realistically speaking if you were told you had a 97.5% chance of winning the lottery you would defintaly enter yes and expect to win!! So sure comparativly its high risk but geesh it not even close to being high enough to be too concerned over. My risk like I said is 1:66, so similar to you, im trying to stay positive cause in all other situations even a 50/50 chance would be considered favourable!!
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Hi! my name is Ashley and just yesterday me and my husband were that we were at high risk, a 1:94 chance of having a baby with DS. I just could not believe it considering that I am 21 and my husband is 22 and we are perfectly healthy people. I am so freaked out and have been crying all night. I am scheduled to have the amino test done next week since i will be 16 weeks. I am so nervous. I was so excited when i found out i was pregnant but now i'm just on pins and needles everytime i go to the doctor. they did the blood test on me which they said had some abnormal looks but the ultrasound showed everything to be fine with the baby. I have read all of ya'll situations and it gives some relief but i'm still scared and praying that my baby turns out healthy.
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Please do not put too much faith in the quad screening. I had a risk of 1:5. My ultrasound showed no markers. I worried for 5 months about my little one. She was just recently born and she is fine. It was a hard time, but we did not want to risk the amnio. Good Luck!
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Amy, your reply gave me such hope that everything is going to be okay. I cannot sleep/function... I am 29 years old and told that I had a 1 in 22 chance of having a downs baby. I am freaking out as I am sure you did also. Today I had my level 2 ultrasound and didn't show any red flags. Two days until my fish results comeback from the amnio. I will remember your story and hope for the best. Thank you for sharing.
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Kelly, Let me know how your results come back. I am hoping for the best for you and your family. I know the stress you are feeling. Hopefully you will have piece of mind soon!
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Just had my scan to day and im 24 years old healthy and no history of downs in my family or my partner!! an im 1:128...WHY? i dont understand, been cryin all day. shall i do the test or not??
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Reading all the comments, questions and responses gives me hope. I am 33yrs old and was informed yesterday that my baby has a 1:23 risk of Downs. I am upset, worried, anxious and until now was enjoying being pregnant. We have scheduled a amnio which only increases my worry as I will have a definite answer and need to make a decison. My husband is being extremely positive and refuses to believe in the results. I on the other hand tend to go theother way and envision the worst possible scenario. We have a month of waiting as I am only 13 weeks and need to wait a further two weeks to have the amnio. Then another two weeks for results. I wish everyone in this situation or similar all the luck in the world.
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Reading all your replies has made me feel so much better. My results came back today and I have a 1:166 high risk of DS baby. I am scheduled for a level 2 ultrasound on Friday. I will try to stay as positive as I can, Friday seems like forever right now. Not sure if we will do an amnio or not.
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I had my amnio on monday and am now waiting for the results. I had an ultrasound done before the amnio, like a morphlogy scan but called an anomoly scan, an nothing seemed to be wrong but apparently at this stage 16w4d that dosn't mean all that much as DS babies dont tend to have any structual anomolies at this age. Though I thought id share a comment made by the technican with you all, she claims that positive sceening test results are very common (she sees at least 1 a day and our city isnt that big and they arn't the only specilist medical center) and that a positive screen is nothing to get too worried about as the majority of screen positives are fale positives. Keep strong girls, for yourselves and your bubs!
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i am in the same place as you., i had an ingrated screening test and it showed 1 in 38 (opposed to 1 in 120) and I am 37 years old., i just did an amnio. today, will take 2 weeks to get an answer, i am only 16 weeks pregnant, i am devasted. let me konw what answers you get
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Hi ladies, Just wanted to let you know that I got my amnio results back today and was given the all clear. I had a very high risk 1:66 (well compared to most on here) and it turned out just fine!! After so much worry and so much stress I can;t help but feel bitter towards the who screening proceedure! I know alot of women get a low risk assessment, but what about those women who get a high risk. Its estimated that at leas 1 in 20 women will be tld they are high risk and there is no way in hell that many women have DS children. In my opinion the tests themselves have one major flaw; they aim to identify as many DS pregnancies as they can and in order to do that they have have cut offs that don't really reflect a high risk at all. My risk was 1:66, so thats 98.5% chance bub will be fine... when you say it like that it seems silly to even worry but when you find yourself in the situation that is all you can do, and do it well!!!
A 1:38 means that your bub has over a 97% chance of NOT having DS. Thats huge! I know it is really hard not to worry, I worried myself sick for almost 6 weeks. These tests are not relaible, have MANYMANY MANY false positives ( i read over 90% of screen highs are false positives) and cause so much worry. You need to relax, for the sake of your sanity and your bubs health....easier said than done though huh. Can you get FISH results? They are short term results (specifically for the trisomies, 13, 18, 21 and x and y) and you get them after 2 - 3 days.... they are around 98% accurate. = |
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they told me the same thing...only god knows..i dont belive them
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Had my amnio today. There really was no pain, slight discomfort once the uterus was penetrated. The blood test they did before the amnio was more painful than the procedure itself. The radiologist and Doctor were absolutely wonderful and couldn't be more accommodating although they didn't give me any indication that the baby was o.k which is all I really wanted them to say . I got to see her wriggling around on the screen which was comforting. Trying to be logical about the whole 1:23 chance. Its worked out based on statistics. It is not based on the individual. Now the hard part really begins..... the wait. I pray that she is healthy.
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like i said before im 1:128. and my appointment for an amnio is the 16th...having 2nd thoughts if i even should go through with it??Been thinking about it SO much so im going for a second opinion the 13th of october (next saturday) its a private scan. and if all is OK i'm going to cancel my Amnio appointment.Because i dont want to go through with the Amnio because the risk is higher for me to get a misscarage than a baby with DS.
I;m from sweden. And in sweden we dont even do this scan...and we do not have a higher DS country.it feels like...i dont know even if you had a risk of 1;22 you still have a HUGE chance of NOT having a DS baby...and getting a high risk is souch a heart ache and consern...and for most of us its false alarm.......well we see what the scan says on saturday...hope all is well. x = |
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Sara, I had the same soft markers as you but I am 40 yo so my quad screen came back 1:135 for down syndrome. I am only 18 weeks preg and I worried terribly for about a week. But after doing lots of research I realized that I would probably fail the blood screen on some factors just based on my age AND those soft markers almost always disappear by 3rd trimester and even if they don't; in and of themselves they do NOT cause a baby any developmental or physical problems. Further, many babies have them, more normal babies than those with chromosomal abnormalities. If you look at the testing data almost anything like this could be a "soft marker" for a problem, but in reality they just could not see these or didn't look for the chroroid cysts or echogenic foci in u/s until recently. They really don't know what either of these mean, but again most babies with these markers alone are perfectly fine. If your baby's head circumference, femur bone, humor bone, nasal bone, bowels/kidneys, and skin thickness in his/her neck were normal...which they would have told you if they were not....those markers can often be more indicative of a problem....but as you have read in this blog even those measurements or what they think they see bouncing a sound wave off of your baby can be WRONG. Try not to worry, just be happy and love your baby.. Remember odds are so much in your favor that nothing is wrong. You can have a 3rd tri u/s to check the heart and brain again, this is what I am faced with...and although logically I know those 2 soft markers will most likely have resolved...I just don't know that I want any more stress or worry if they think they see anything else as the older the baby is, the less accurate the u/s for other factors/measurements. Good Luck and try to be CALM.
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16 Hours till I find out whether my bambini has downs. I am anxious. For the last month I have felt stuck unable to enjoy anything the miracle of pregnancy should offer. I know that it is probably my mind set and I should be positive but its difficult when faced with the prospect that things may not be o.k. I wonder if bambini has missed out on my love for that month does she know? Can she feel my stress and anguish. I accept that people just want to wish me well but I don't want to hear " Baby will be fine. They don't know.
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How did the results turn out M?? I know what you mean by saying you hate people saying 'baby will be fine' because your right they dont know.... but I think they are just expressing positivity and hope for you (unless they are saying that as a way to dismiss your concerns). I found it really difficult to hear but I also realised that somtimes even saying the right thing can sound like the wrong thing when you are under that much pressure. Just try and remember that they mean well and do want the positive outcome for you and bub!
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Our Baby's results came back a false positive. She has 23 perfect pairs of chromosomes. Which brings great relief. Unfortunately I actually believed that the outcome would not be so positive and my strength was my fantastic Husband who chose not to believe the first results of my blood test and ultrasound. My HcG levels were doubled and the volume of fluid at the base of the neck was triple the expected amount. 1:23 was our risk assessment which was heartbreaking to hear. I truely feel for women who are currently going through the anguish of possibly having a child with downs. Statistics play a massive role in determining the risks and its not based on how the individual's body deals with pregnancy or how the individual's baby develops within the womb.
We can finally enjoy the wonderful miracle of pregnancy. I wish false positives results to all... = |
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Hello to all. I have 38 and my wife 40. My wife get a double test result which shown a 1/50 risk rate for DS, so we are strongly think that she should have an amniocentesis test. I stongly believe that all should have healthy baby's than agonising with the thought and with the picture on everyday life of having a disabled child, no matter the support of the different org. This is my personal opinion, and I think is just.
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Sometimes people are not always blessed with 'perfet' babies, but they see them as a blessing none the less. There are many conditions that a child may have and many of them the parents will not know about until after the child is born (autism for example) I think it is the parents personal decision as to whether they would keep a child with DS. Personally I think that it is true that children with DS usually need special care (to varying degrees) but I wouldnt call looking after my child agonising, different yes but agonising no way. If I were ever in the situation where I found out I was having a child with DS I would definatly keep him/her.... I look at it this way, im not god and I dont have the right to judge whether a life is valuable/worthy to live. How could I possibly dare??? Though each to their own and I respect everyones right to choose!
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Hi Paula, I have just had my resultsfor my blood test back for downs syndrome andmine are high risk too. Im 23 first baby and 17 weeks pregnant, its soo frustrating what to think, i havent slep or ate im soo worried.
My results came back 1 in 240, the cut off point it 250 so anythin above that is low risk. What where your results showing? have you been for the amnio yet? i have my appointment booked for the amnio for tomorrow Thursay 18/10/07, there is actually more chance of misscarrige with the amnio 1 in 100 than my baby being downs, very confuring. My e-mail address is kazthomp@yahoo.co.uk would love to hear how you coped being the same age as me and what your outcome was love karen xx = |
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anyone who has had a high test result please let me know how the amniowent i am due to go tomorrow and scared out my wit aboutmy baby having downs syndrom, tryed for a year to get pregnant and lost one and am now finally happy I am half way through and they bring this news on you, why do they do this??
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had my amnio tuesday!! and it was NOT painful. it feelt like a deep piercing thats all...which it is in a way!
had my results to day and ALL is good!!!!! im so relived that i can enjoy my pregnancy!!! = |
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Hi Karen I had a high result too (if you look abouve you can see my posts) but unlike oyu my results were REALLY high 1:66. I was told by my doc that the odds of miscarrying from an amnio were between 1:250 - 1:300, but I guess each centre has different figures and different genaeral estimations they are happy using. Your risk isnt that high (really 10 more points and you would be low risk) so as hard as it sound I wouldnt stress too much about it all. These tests are notoriously bad at giving false high positives, all you have to do is read this board to see that. Your risk 1:240 equates to a 99.58% chane that youe baby is fine!! when you think of it that way the high/low risk lable dosnt seem to matter that much. The actual hig/low risk catagories are deemed that in relation to the ds risk vs the miscarriage risk after an amnio, high risk means there is a greater chance of ds than a miscarrage (stastically speaking) and low risk that a amnio carries more risk..... your risk is soo borderline. Have you had counselling ? Talked to your doc? In your situation im not sure I would have had the amnio (yes the wating would have been hard but. the numbers ae just sooo close) The amio itself is not too bad, a little strange and crampy but no where near as bad as I thought at all. The worst part was the waiting for the results! I am so thankful everyday that the stress this tests put me thorough didnt harm the baby, afterall nothing is wrong with him and he was just growing/developing minding his own business when all this happened. Not a nice start. Good luck with your amnio and be sure to let us know your results, im thinking of all you ladies (ive been there myself)
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Thank you LW and Jodie for your e-mails, i had the amnio done on thurs and it wasnt bad at all, all i have to do is sit and wit for my results to come through now which is another headache we all do not need on top of our pregnancy.
It scared me soo much because i though mostly older women are high risk, comeing on this site has opened my eyes and seen it isnt at all. I just want everything to be ok now and get on and have a healthy pregnancy that i can enjoy. love karen xx = |
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would like to thank everyone for writing on this site, it has helped me cope a whole lot better over these stressfull weeks.
Had results back today from the amnio and baby is perfect and healthy. Thanks everyone Karen xxxx = |
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Congratulations Karen, awsome news!!
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Has anyone besides me and Sara been given "soft markers" for choroid plexus cysts or intracardiac foci? My research indicated these were not great markers for DS, but just curious if anybody else has had them.
Also, Sara...just curious if you had any follow-up ultrasounds? thx. J = |
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Hi Paula,
I had an amnio test on tuesday as i was 1/140 risk of having a downs baby and i am 31. I got the results today and all is fine and i an expecting a baby girl. I know nothing i will say will stop you from worrying as i did not sleep all week but most people i spoke with that have had the same test have had negatvie results (normal and healthy) and i am sure you will be no different. Take care of youreslf and your mini bud and stay postive x = |
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Hi everyone,
Just wanted to share my story... probably it will not make any difference to anybody (I know it probably would not have helped me at all if I would have been in your situation), but I owe it to my daughter. I was 20, pregnant with my second child, and due to a difficult pregnancy (bleeding early on, catching a cytomegalovirus in the first semester from my DD, being involved in a bad car crash at 3 months etc), I was closely monitored with lots of tests and multiple scans up to 4 weeks before my due date. All tests came back absolutely normal, and I still remember the exact words of the ultrasound tech describing my daughter's heart as "perfect" during that last scan. My daughter was born a week and a half later, slightly early, at home (very quick labour, we couldn't make it to the hospital!!). Since both she and I were well and attended to by 2 midwives and an ambulance crew there was no need for us to go to the hospital. The next day our family dr came out for a check up, and informed us that he thought our daughter had some physical characteristics that would seem to indicate she might have Down's syndrome (but he didn't think she had it "since we were so young and she seemed perfectly healthy"). Long story short his initial diagnosis was confirmed after blood tests (she has a very rare type of Down's; a 21;21 translocation that basically means that she has the regular amount of chromosomes (46) but one of her chromosome 21s has a piece of another chromosome 21 "stuck" on it, but this only makes her even more special and rare :)). Probably needless to say but the following few weeks we were in hell on earth... one of the things that did seem positive to us at the time was that after pediatrician check ups everyone seemed to agree that her heart was healthy. However the hearts babies with Down's are routinely scanned even if physical examinations would seem to point out that everything is ok... due to the fact that she was born at home and did not require hospitalization, my daughter had her scan at 8 weeks. When we were sitting in the waiting room, I remember watching a poster of a local "Heart Children" support group and making a remark to hubby more or less along these lines: well at least that is one phone number we won't be needing... famous last words! After the scan we were invited to the dr's office and from her face we could already tell something was wrong. We were told our daughter had a serious heart defect that would need to be repaired as soon as possible to ensure the best long term outcome. I guess there is no need to tell anyone how we were feeling... Funnily enough, from there on things seemed to take a turn for better. Our little one had her heart op when she was 3 months old, and was home 3 days later (opposed to the 14 days that is the norm after her op) and slowly we began to get to know the little girl who had been labelled and introduced to us as this scary and unknown entity otherwise called DOWN'S SYNDROME. Afterwards, I have come to detest words like "normal", "healthy" and "perfect" that people seem to use with such ease without thinking what is the true meaning of those words. My daugher who will be 5 in December, IS all of those things (yes even healthy since she has not been ill since her operation more than 4 years ago) and in addition also BEAUTIFUL, WONDERFUL, and most importantly, her own unique self and I would not have her any other way. I wish people would see beyond her slightly oriental looking eyes (and if they would do that they would also notice her beautiful, unique eyes; one brown like daddy's and one blue like mommy's!!) and the D word (or worse for some the M word or the R word). If they do spend more than few seconds with her they WILL notice her cute smile and just how smart she is (we are a bilingual family and she speaks and understands both languages). Yeah she can also be a handful, and she definately knows what she wants and how to get it :) !! And she completely bosses her big sister around :)... oh and she loves Mickey Mouse and Donald Duck and our 9 month old puppy, gerbils and aquarium fish and swimming in the sea and drawing, cars (the real ones and toys as well!!) and her baby doll.... She loves to eat sea food, broccoli and her favourite drink is milk. So many personal characteristics and yet the world thinks the one (and sometimes only) with the most importance is THE SYNDROME that in every day life does not make any difference to us, or her, at all! Just to make you see, I do have to add that IF I would have known about her "condition" while I was pregnant, I WOULD HAVE ABORTED :( This is why I don't believe in "informed choices" because you can't possibly know how you are going to feel about your child based on a diagnosis... it is not a life sentence and there IS a child, wonderful and unique, under that label that is given to you, and it is just up to you to see beyond that. I am not against abortion as I believe that you should be free to decide when to have children, but if you DO want a child please don't give up him or her based on a long list of possible characteristics and risks. I don't believe in any kind of god but if I look at my life, my daughter, and the fact that that little extra piece in her genetic makeup went unnoticed during my pregnancy thus allowing us to get to know this wonderful little girl, would be the only thing that has ever happened to me that could have the potential to make me think that some kind of divine intervention exists. Sorry for the long and probably boring post. All my best wishes to those of you faced with the most difficult dilemma imaginable, and I hope in the end everything will be just wonderful for you - in one way or another. Jo = |
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Jo i was wondering did you have an amnio?
Your daughter sounds so sweet and would like to wish her a life full of happiness. = |
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Nope. No amnio since all results came back normal (including the numerous detailed scans and AFP). I probably wouldn't be here now otherwise because my daughter would never have been born. I consider myself to be one of the luckiest people alive because of this...
Yes, she is very sweet - when she wants to be :) just like any other 4 year old I know! Jo = |
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Hi. My wife's result came back yesterday and had 1 in 165 (0.6%) chance DS. She's 36 with good health. We are scheduled for Ultra Sound II in 4 weeks and were are concerned . The doctor insisted on having the amino test which my wife and I both reject. It looks to me that all these statistics and numbers are just to scare you and push you to go for these expensive tests. Add to that the ammino has 1 percent chane of having miscarriage which is higher than the chance of having DS (0.6%). Does this make any sense to any one or I need to take Math 101 to understand these number!
Before any one decide to go for any test I suggest you read this article http://www.askdrsears.com/html/10/T107400.asp = |
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Hi Andrew,
First of all congratulations on your pregnancy. Deciding whether to go through with the amnio must be one of the most difficult decisions you could be faced with... unfortunately it is seen like something of a routine nowadays for anyone over a certain age or after anormal test results... I would urge anyone to think long and hard about exactly what they hope to obtain from this test before actually going ahead with it... yeah in the best case scenario you will find out your baby is "normal" (they can't tell you though if your child will develop problems in the future, like autism or any other even more debilitating, or even a life threatening condition!!) and will be able to continue your pregnancy without further worries. In the worst case, you could be told your baby is "not compatible with life" (due to rare genetic defects) and face months of worrying and even more difficult decisions. I'm not sure what to make exactly of the fact that down's syndrome is widely pubblicized as the main reason of why to have this test ultimately aimed at letting you know whether your baby is "perfect" or not in order to terminate him or her "in time" if the results should not be what you had hoped for. As I mentioned before, I am not against abortion, but at this stage of pregnancy I believe most have already decided that they do want to keep the baby even if the pregnancy wasn't planned and I don't believe you should kill that little being that you were so eager to meet based on the fact that she or he has a medical condition that yes might affect some aspects of his or her life, but is not debilitating, life threatening nor does it cause, directly, your child to suffer (unlike people who can be cruel at times but that is certainly not caused by the medical condition), and most importantly does not mean that your child won't be able to lead a full and a happy life... I can't personally relate to the more serious problems that may be picked up by the amnio such as trisomy 13 or 18 since I have not been faced with that kind of situation myself, and obviously those kind of conditions are, in contrary with Down's syndrome, very serious and my heart goes out to all families who have had to come to terms with such a diagnosis for their unborn or new baby. I have a strong admiration for those of you who do decline the amnio on the basis that it would not make any difference to you since you would keep your baby no matter what the result. I would not have been as strong and after my daughter was born, I resented every doctor that I had dealt with during my pregnancy because they had not detected her down's syndrome "in time". I am now horrified that I ever thought this way, but unfortunately that reaction was caused entirely by the way our world has chosen to picture anyone with a so called disability. Could you imagine a world where as soon as you go for your first prenatal appointment, your dr will start lecturing you with a long list of potential health and other kind of troubles your child may experience in the future based on your race, occupation, and way of life?? This is where we are heading... it is obvious that people with down's syndrome are treated like a lower life form... already before they are diagnosed, let alone had any chance to show anyone in the world how their true personality is and what they are capable of, they are being judged and presented to the world as defective. And what comes to all the tests out there to detect this condition, they are using HUGE amounts of money to weed it out... Extermination does not cure anyone... it is just a way to put your head in the sand and pretend that this problem does not exist (and actually I don't see it as a problem anyways). If all this money and effort would be used to find what I can't call a "cure", since in my opinion down's does not need to be cured, but ways of helping people with down's syndrome have an easier life and of making it easier for the society to accept them as human beings with the same rights and responsabilities as the rest of us, these tests would probably not be needed anymore. The first step towards this direction would be familiarizing all doctors with people with this condition, not just as a medical case but as PEOPLE first and foremost (some excellent reading related to this matter: http://www.nads.org/pages_n ew/news/ruletheworld.html). The very people who are supposed to advice us on extremely important decisions are often the ones who are scared of the condition and have never been involved with people with down's on a personal level. Also I think some studies on families who have a member with down's syndrome should be conducted, concentrating closely in finding out what would they do today based on all their experiences if they would be told that their unborn baby has down's. I suspect an overwhelming majority would not terminate. Anyway, rant over - sorry if I bore everyone but as you can tell this is an issue I am passionate about. Andrew, if you and your wife would like to stay in contact, or have any questions, please feel free to email me at kurgana@hotmail.com. Jo = |
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