Has anyone had this test completed before. I was just informed that I was a slight risk (1 of 178) for my baby to have down syndrome and in order to be sure, I would need an ultra sound with the amnio. I am petrified about this and really do not want to go through with the amnio. I know that I'll find out for sure with the amnio, but then I was also informed that there is a risk of miscarriage for the rest of my pregnancy. I was told that my first pregnancy was text book and I am four months along with this 2nd one and experiencing many different things with this one. I was also informed that this test has a lot of false positives and the genetic counselor would explain all of the variables, but I'd like to get some feedback from woman who have actually been there first. I would appreciate any feedback in order to help me through this. My appointment is for Tuesday August 8th.
Thanks,
A.
Hello everyone,
I just wanted to thank all who offered me either their own experiences and/or their advice. Sorry for the delay in informing you of what happened, let me just say that this has been the most nerve racking and worst 4 weeks of my entire life.
My husband and I went round and around with each and every decision that came into play. From the beginning I had planned on keeping the child no matter what and my husband informed me in his words "ultimately this is your decision, but I just cannot deal with a child that needs extra special care". This hurt me more than you can imagine and gave me more to think about than I really needed to or wanted to. It took a while to way the pros and cons of both sides, keeping or aborting, with so many issues arising that I normally wouldn't have given a second thought about. I tried to please both myself and my husband and still think about how this would affect my 1st child.
Too many details to relay to everyone, but the final outcome was that I received the level II ultrasound and no markers were found, which changed my percentage to 99% out of 100% that the baby was fine (my husband was petrified of that 1%). I went forward with the amnio and my baby is completely normal with all necessary chromosomes. This was the biggest relief to us. I think ultimately I was more afraid of the final result than the actual test, because I don't know if I could have made the next decision with the proper state of mind.
I am extremely glad that this is over now and I can get back to a some what normal pregnancy. I also found out that I was having another boy, which my son is extremely happy about.
I know some of you have your thoughts and concerns about my husband and his decision and in his defense, he is entitled to his opinion. We have been through alot together and will be I'm sure through a lot more. I love him with all of my heart and cherish that he feels comfortable enough to be honest and see all aspects of everything that happens in our life together.
Thanks again for everyones help,
A.
PS. I love this site and think this was such a great idea
Featured Answers
T.D.
answers from
Pittsburgh
on
Hi A.,
I was told the same thing sixteen years ago with my second child and I opted not to have the test done because it wouldn't have affected my decision to keep my baby or not. I ended up having a beautiful little girl. She will be 16 in November graduating next year. She is a straight a student with a 4.0 grade point average and is very athletically inclined to where there are colleges looking at her for a full paid scholarship to college. I am not telling you what to do, but the risks of the test scared me more than taking care of a handicapped/disabled child. At that time, I was also told that the test was very painful and the needle very very long.
T.
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D.S.
answers from
Pittsburgh
on
I opted not to have this test done because I was told that there was a 1 in 200 chance of miscarriage. I wasn't going to take that risk
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A.
answers from
Johnstown
on
I was also told about the down syndrome test. Because the risk of false positives is so high I declined the test. I now have three perfectly healthy girls 9,4,and 2 and after a few weeks i forgot all about the test and worrying wether they had d.s. or not so they were generally unstressful pregnancies.
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F.W.
answers from
Philadelphia
on
Hi A. � Don�t be petrified (I know easier said than done!). I had an amnio 2x. I have a perfectly healthy 3 year old son - obviously it turned out to be a false positive blood test. I had the exact same situation, I even think the statistics were the same, a 1 in 178 chance of having a down syndrome child and an amnio was recommended. I think my Ob called me late on a Thursday afternoon and said they could schedule it for the next morning. I was shocked and scared when I got the phone call but since it was going to be scheduled so quickly, I didn�t have too much time to brew over it. The fact that there was a 1 in 200 chance of having a miscarriage was very scary, especially, since there didn�t seem to be much difference in the statistics of a 1 in 178 a down syndrome baby and 1 in 200 chance of miscarriage. I quickly discussed it with my husband and we decided to have it done. My sister-in-law had the procedure done so I called her but wasn�t able to talk to her before I had it done, so I pretty much went into it scared and not knowing what to expect. Anyway, the procedure wasn�t bad. The first time I had it done in MA and it was done by the Ob (not my Ob but one in the practice). They do the ultrasound to find a good area to insert the needle and then they extract about 2 tablespoons of amniotic fluid, and that�s it. It takes only a minute or 2, the prep time is actually longer than the actual procedure. Of course, it does seem a little longer when you�re lying there with a needle in your abdomen but as long as you�re not afraid of needles, it really isn�t too bad. It is pretty similar to drawing blood (so hopefully you don�t think drawing blood is that bad) and hurts about the same, it�s a needle pricking your skin and then a little more because it�s going a little deeper (hopefully I�m not scaring you even more). Everyone says the wait afterwards to get the results is way worse than the procedure (they grow the cells from the fluid to count the chromosomes and that�s why it takes about 2 weeks to get the results back).
I�m now pregnant with my second child (7 � months now) and because of my age (over 35) had the amnio done. I recently moved to PA and had it done at Abington hospital. I have to say it was actually a better experience here in PA. First it�s done by the neonatalogists at the hospital rather than by the Ob so they are much more experienced because they do it so much more. Also, the needle was thinner so I didn�t feel it as much going in (but it may have taken a few seconds longer) and it was also probably due to the neonatalogist being more experienced. I didn�t experience any of the possible side effects or complications, both times everything went very smoothly.
First, although it is true that there is risk of miscarriage, it is only immediately after the procedure not for the whole pregnancy. The statistic quoted is 1 in 200 but that is a national average which includes areas that have worse healthcare than we do.
After the procedure, you�re supposed to take it easy for 24 hours, no lifting anything heavy, no sex, etc. I figured I�d follow the recommendations to a T and even more, so the first time although not required, I layed in bed for the day and only got up to eat and go to the bathroom, etc. The second time, I didn�t go to bed but I definitely took it easy, I might have worked at my computer for a little bit but I pretty much did as little as possible (and I shipped my 3 year old off to Grandma�s � you can�t pick them up because you can�t do any heavy lifting). If you read the literature on the internet, they�re more conservative and say the same things as the dr�s about the first day of the procedure, but also to take it easy for day 2 and 3.
If you want to know more about the amnio procedure go to the following website from the March of Dimes, they have comprehensive information on it. (Also, you can do a search on the internet and see a lot more articles by others � but this is a good one.)
Email me if you have any questions or just want to talk some more� I�m happy to answer any specific questions you may have.
Also, that�s a terrible thing for someone to say to you� that since you have a perfect first time you�ll nothing but problems with a second. That�s not true, it�s just another thing people say similar to being able to predict the sex of the baby based on how you�re carrying, etc. Every pregnancy is different even for the same woman (and that�s from Dr�s and Nurses). I�ve heard that too but worded a lot differently, that if you had an easy child first then you�re second will be more difficult or vice versa but they were talking about temperament not health issues. Don�t think like that, it will only stress you out and that�s not good for you or the baby. Just stay positive and believe that everything will turn out just as well this time. Even with the amnio and a c-section, I had a perfect healthy son and no issues since then either and I�m hoping for the same with the second one.
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S.M.
answers from
New York
on
Hi A....
My cousin had this done and her result came back 1 of 38 for the chances of her baby to have downs. I'm happy to tell you that after they preformed the Amnio they found out that there is no risk of downs for their baby.
I hope this makes you feel a little better... Stay positive, keep your head up and stay focused on the now!!! :) Easier said than done, right? Enjoy your weekend and 'try' not to stress yourself out over it. Let us know how your appt goes.
Take Care,
S.
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L.F.
answers from
Boston
on
Hi A.,
I have a happy and healthy 10 month old little girl. I had the amnio and like you I was also very scared. Even talking to the genetic counselor is scary because they tell you every possible thing your baby could have. What I was most scared about was a needle in my stomach and if anything happened to the baby. I had heard that you get a shot of local anesthesia first, however the doctor informed me she does not do that -- only adding to my aniety. Well, in all honesty - I barely felt the needle and it was more a feeling of pressure than pain. Even my husband commented about how I didn't even flinch or anything. I just watched the monitor and watched our little baby. After, I did not have any problems either. I honestly cannot say it feels that way for everyone but once it was done I was glad I chose to do it. The whole thing was nowhere near as bad as my mind had built it up to be. Later, hearing the test results and that everything was ok was a huge weight off my shoulders. I chose to have the test for the peace of mind it gave me and I am glad I did because I really did feel a lot less worry after having the test. Best of luck to you and your baby and please let me know how it goes!
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A.U.
answers from
Philadelphia
on
I have three children and had the AFP test come back with the possibility of down sydrome with two of them. The first was with my first childm who is now eleven. We chose to do the ultrasound, but no amnio, unless necessary. Everything was fine. The test for my third child, who is six, also came back with issues. We had a level 2 ultrasound and found nothing. All my children are fine. I think the test they give is not accurate enough. With as advanced they are with the ultrasounds, I think they can pick most everything up from that. I would not elect for the amnio unless something comes up on the ultrasound. I hope this helps. Everything is in God's hands.
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P.
answers from
Scranton
on
I did not have the amniocentesis done because my doctor informed me that the rate of miscarriage from the procedure was one in 100, and I would have continued the pregnancy even if I found out that the baby had Downs. My first child was born when I was 35, and my second when I was 40. I was told that because of my age there was an increased risk of my babies having Downs Syndrome. Each pregnancy was different, my first much more difficult than my second, but both of my children were born without Downs and have had no major health problems since. They are now 11 and 5. Please think long and hard about having this procedure done - would the benefits outweigh the risk? In my case, I decided they would not, and I have never regretted that decision.
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H.H.
answers from
Syracuse
on
Amiee~
First let me say that I have NEVER had an amnio, but my mom did with my younger brother... she said that she would never do it again.. she was 38 when she had him and it was not fun! She said that it wouldn't change the out come, and she would still love him of course, so in a way she regrets putting herslef and him through it! GO with your GUT! what is in your heart! Hope I gave a little peace of mind! :)
H. H
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M.H.
answers from
New York
on
HI I AM M. AND I HAVE HAD A AMNIO AND I DIDNT EXPERIENCE ANY PROBLEMS NO CRAMPING NO MISCARRIAGE AND I HAD A
HEALTHY BABY HE IS 4 YEARS OLD AND HEALTHY, I WAS 34 WHEN I HAD MY AMNIO I HAD MINE 6 MONTHS PRIOR AND THE RESULTS WERE NORMAL THE PROCEDURE WAS JUST UNCOMFORTABLE AND I WAS A BIT NERVOUS BUT IT WAS JUST LIKE HAVING A SHOT. LIKE I SAID I WAS OLDER THAN YOU PROBABLY ARE SO THERE MIGHT HAVE BEEN MORE OF A RISK FOR ME AND I DIDNT HAVE ANY PROBLEMS SO I HOPE TO SAY THAT YOU WILL BE FINE. YOUR DOCTOR CAN REASSURE YOU ALSO I KNOW OF A FEW OTHERS WHO HAVE HAD THE AMNIO AND THEY ALSO DIDNT HAVE ANY PROBLEMS NO MISSCARRIAGES THAT I KNOW OF. SO
I HOPE THIS HELPS AND GOOD LUCK TO YOU AND I WISH YOU ALL THE BEST WITH YOU PREGNANCY, THERE REALLY ISNT ANY THING TO BE FEARFUL OF ESPECIALLY IF YOU HAVE A GOOD DOCTOR, AND I WILL SAY A PRAY FOR YOU IF THAT HELPS. BEST WISHES M.
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M.
answers from
Boston
on
Hi A. -
I had amnio and ultrasound with my first as there were genetic markers, although slight, in the ultrasound for downs syndrome. I decided to have it and was very nervous. It did not hurt at all and was over in less than five minutes. What helped me was to pick a spot on the wall or ceiling and focus on that while they are doing the procedure. Before I knew it - it was over. While they say that you don't need anyone with you, it helped me that my mother was there. My husband was back at work and couldn't bear to watch it. It was okay because my mother was great (I am one of 9 children so she has pretty much seen everything).
Good luck with your decision. I am sure that everything will be fine.
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P.
answers from
New York
on
Yes I had it with both my girls and had no problems. The older you are, the more likely the preliminary tests suggest you should have the amnio. There are (low) risks of miscarriage. It really doesn't hurt and it is over quickly - they just insert the needle into the sac while watching it all on an ultrasound. The bottom line is do you want to know if there are genetics defects that would influence your decision about the pregnancy (depending on where you stand on the choice issue) and/or to prepare yourself now for these possible problems.
Hope this helped!
P.
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L.
answers from
New York
on
Hi A.,
I was in your position with my first child. I couldn't go through amnio. And, with God's blessings my son came out prematurely BUT with no down syndrome, as speculated.
The ultrasounds showed my son had shorter than normal limbs at around 22 weeks, he came out at 29 weeks. He is still short for his age right now, but he has no other medical problems.
I would advice you to do what will not stress you. If doing an amnio will calm your worries, then go ahead and do it. If you think doing it will make you worry more about the risks, don't do it.
Good luck,
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M.M.
answers from
Philadelphia
on
I had an amnio/ ultrasound and my 5y.o daughter was born with no complications and is an absolute joy in our lives. No birthdefects or complications.
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K.S.
answers from
Hartford
on
When I was pregnant with my 4 month old I was told I had almost the same exact risk (about 1 in 178). My doctor recommended the ultrasound first where they measure the baby's brain, spine and extremity growth and then if there was still a problem he would have ordered an amnio. I was told by the sonographer that it is very normal to have an elevated risk and normally just the ultrasound is enough. I wouldn't recommend the amnio unless it would be a deciding factor for terminating the pregnancy should the baby have down syndrome but I'm not a doctor and after my ultrasound they told me that my risk was cut in half so I decided not to get the amnio. Hope this helps!
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C.S.
answers from
Allentown
on
Hello,
I wanted to respond to your email to let you know that I had an amnio because of my age at the time (38)and nothing more. I didn't want to have a baby with downs because I don't think I have it in me to take care of a baby with such needs. I couldn't bare it. Some people are cut out for it and God Bless them but I am not. So I wanted to know so I can relax the rest of my pregnancy. I had it done and it turned out that my baby was perfectly normal and she is Thank You God! The test is pretty quick and nothing to worry about. Hope this helps somewhat. Good luck
C.
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J.S.
answers from
New York
on
Hi A.,
My sister was told the same thing during her pregnancy 18 years ago. She opted not to do the Amnio because Down Syndrome was not going to effect her decision to have the baby. SHe had a healthy baby girl. I am not suggesting that you make the decision based on my sisters but consider what the results are going to effect about your decisions with the baby or perhaps just piece of mind.
Good Luck, I hope everything is perfect.
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C.L.
answers from
Lancaster
on
A., I KNOW HOW SCARED YOU MUST BE.THE TEST IS VERY SCARY...WHEN I WAS PREGNANT WITH MY NOW 3 YEAR OLD THEY THOUGHT THAT THERE WAS A CHANCE FOR DOWN SYNDROME ALSO...THEY SPOKE TO ME ABOUT THE TEST AND EXPLAINED ABOUT THE FALSE POSITIVES AND SUCH, BASED ON THAT AND THE FACT THAT BEING EMOTIONAL WAS NOT GOOD FOR THE BABY IF I DID INFACT GET A POSITIVE, NOT TO MENTION MISCARRY I HAD DECIDED NOT TO DO IT, AS MUCH AS MY HEART WAS BREAKING AND I WANTED TO KNOW, THE LIFE OF MY BABY WAS MUCH MORE IMPORTANT, DOWN SYNDROME OR NOT... I KNOW THIS MAY NOT HELP BUT IF YOU PLAN TO KEEP AND RAISE YOUR BABY REGARDLESS OF DOWN SYNDROME THE WAY I SAW IT WAS TO THEN NOT GIVE THE BABY A CHANCE TO DIE...GOOD LUCK AND YOU AND YOUR FAMILY WILL BE IN MY PRAYERS..AS A SIDE NOTE FOR MY SON, HE WAS FINE AND GOD WILLING YOURS WILL BE TOO...C.
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C.
answers from
Bangor
on
This is great timing! My beautiful granddaughter arrived yesterday and her mom and dad were told back in March that the test came back suggesting the baby had Downs. My husband had a sister with Downs, so even though the Obstetrician told everyone not to worry, we were a wreck for a week. They went to Maine Medical center where they had an ultrasound and there was a team of genetic counselors standing by and an amniocentisis scheduled. Everything was fine and we now have a beautiful, healthy grandchild. Incidentally, abortion was never an option. Both sides of the family are very loving and supportive so either way, we would still welcome this beautiful grandchild. We now know that this is a very common faulty test. I wish you and your family love, luck, laughter and a welcomed child.
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L.C.
answers from
New York
on
I had an amnio with my 3rd pregancy , because my levels were high .. Everything turned out fine . Hes now a healthly 16 yr old close to 6 ft tall..
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A.M.
answers from
New York
on
No matter what the test says you are going to keep the baby. So why would you even put yourself or the baby threw this. Let time and god do their jobs. A.
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C.
answers from
State College
on
Hi A.. I have two sons, 4 and 16 months, and have had an amnio with both of them (I'm an older mother). The risk of miscarriage with the amnio is pretty slim but there is still a risk. The test was very quick (about 45 seconds) and was relatively painless. It kind of feels like cramps. I chose to have have them done because I wanted to know in advance if there was something wrong so that I would be prepared.
My best advice to you is to make the appointment. You will meet with a counselor who will go over your risks and then you will have an Ultrasound done. They will check for the markers of Down's Sydrome and will then give you the odds that your baby has Down's. You will then be asked if you want to continue with the Amnio. You can very easily say no at that point. There is no pressure to have the amnio done and they ask me several times if I was sure that I wanted to go through with it. You will more than likely get good news during the ultrasound and you may decide not to go ahead with the amnio.
I also want to tell you to stop listening to the people that told you your second would be nothing but trouble. My pregnancies were very different, each with their good points and not so good. It's the same after the baby is born. I think that you will find many new challanges and many new joys.
Good luck and I wish you all the best.
C.
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G.
answers from
York
on
A.,
First of all I think it was very insensitive of people to tell you that you would have nothing but problems with future children. Not really fair to you.
I am a mom of four. All of my pregnacies have been normal but the first when I had high blood pressure and needed to be on bed rest. If I understand your question, you had the alpha fetal protein test (I think that is what it is called) to determine if there is down syndrome or spinal cord promblems. That test very often gives false positives. Before you determine whether you should have the anmio, you need to think about what you would do if you did have a baby with such problems. Would you abort or whould you continue with the pregnancy? For me, it was never a question as to what I would do, so I declined to even have the first test. My thought was, if I wouldn't abort the baby, then worrying myself for 6 or 7 month could cause undo stress on the baby. I do very well thrown into situations, but if I were to know ahead of time I would have been a mess the rest of my pregnancy.
I had a friend who was in your same situation and she had the amnio. For the several weeks it took to get the results she was a mess, only to find out that the baby could still have problems. When her little girl was born, she was perfectly normal. With her two next pregnancies, she refused the test and had healthy babies. My cousin who was pregnant the same time as me, also refused the first test with all of her pregnanies. With her last she did have a baby born with down syndrome. I asked her knowing what she knew after the baby was born would she had preferred to have the test and know so she could be prepared. She said no, she would have just worried too much and she wouldn't have terminated so she felt like she made the best decision. She has a beautiful little girl. I do believe she is a gift from God. She is such a loving child.
I guess my advice to you would be to look at what you would do if you found out that your baby had a defect. However, the test can't tell to what degree your child would be affected. My cousin's daughter has a very mild case of down's syndrome and like I said is a joy, just like the rest of her children. If you think at this point you are already worried, then I guess the test may put you at ease. If it were me, I would not have the test b/c of the risk of miscarriage. But if the concern would consume your pregnancy, then have the test. It is a test that many women have.
I hope this helped.
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K.
answers from
State College
on
A.: I had my only son when I was 36 and was considered a higher risk pregnancy due to my age. It was also offered to have an amnio done to test for Down's. My hjusband and I decided against it because it wold not have changed our deicsion about having the baby. I would suggest that you discuss and determine if it will have any bearing on carrying to full term or not. Amnios are also not full proof giving a true positive (there are false negatives that occur) and there are risks involved (as with any procedure). If it isn't going to affect your decison whether to have the baby then perhaps it is not necesssary. There is another test that can be done, but it is also not full proof in giving accurate info...it is the triple M maternal blood test. Again, not always reliable.
I think also later in the pregnancy the ultrasound can give you a more clearer picture if the baby has down's syndrome or not.
If you have a history of miscarriage I believe (but am not certain) that your risk of miscarriage is slightly higher with the amnio.
If you really need the peace of mind and it will have an effect on whether you have the baby, then do it. I worried during my whole pregnancy (to vering degrees throughout the pregnancy) and still asked the doctor three or four times after he was born if he had Down's.
2nd advice -- DON'T LISTEN TO OTHER PEOPLE!!!!!! They will just FREAK YOU OUT! If they don't have good advice and counselt o offer (just editorial comments) IGNORE THEM!!!! They don't know what they are talking about and it is just putting strain and worry on you that you don't need and is not warranted.
Lastly, Down's is not a death sentence. Does it make life a little more challenging? Yes, but these children are a riot to be around and an absolute joy to be apart of their lives.
I hope it helps. I did not get an amnio done, but I did do EXTENSIVE research on it when I was faced with the same decision.
GOOD LUCK!!!!!!!!
My thoughts are with you.
K.
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R.M.
answers from
Pittsburgh
on
A.
I'm a 38 1/2 y.o. mom of 2 children. My first I was just pregnant a few weeks before my 35th b-day so I was hit w/ some heavy considerations my 1st dr.'s visit - very upsetting at what's supposed to be a very exciting time. My dr. recommended testing as I'd want to "terminate my pregnancy" - the thing was that that was his assumption. My husband and I talked and decided not to do anything that carried a risk of miscarriage - after all, the baby could be fine and then what - and even if she wasn't we were going to play the hand God dealt us - being more prepared wasn't worth the risk - we did do the bloodwork but even did that w/ this in mind - there are more false positives than negatives - so, if it was positive we would see if it was correct when she was born but if it was negative we could rest more assured. w/ our 2nd we did the same thing. this is a very personal decision - and a very difficult one - luckily, we're blessed w/ 2 healthy children - but also know a lot of people blessed w/ children w/ special needs - each child offers something special, and brings challenges (I could tell you all about the very strong personality of our oldest)- anyway, best of luck whatever you decide - just follow your heart and don't be pressured by others.
Rene'
p.s. not sure what you mean by risk but if it's age I know someone who had a healthy baby when she was 46 y.o. also, think of this - you have 177 of 178 chance of that and if your chance of winning the lotto were 1 in 178 you probably wouldn't even play - as for this pregnancy being very different - they all are - my thought and prayers are w/ you at this stressful time
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S.L.
answers from
New York
on
Hi A.!
I'm sorry to hear of the difficult decision you are facing. Although I have not had this test done myself I did want to respond to you with some insight that you will hopefully find helpfull. What you have to do is ask yourself "what is the worst than can happen" with whatever you decide to do and wether or not you can live with those potential outcomes. The way I see it, you can decide to do 1 of 2 things. 1) you have the amnio and risk loosing the baby throughout the rest of the pregnancy. Or 2) You don't have the amnio and are left wondering for the rest of your pregnancy. If you choose the 2nd option the worst that can happen is that you have a child with down syndrome. You have to ask yourself if you and your family are capable and willing to care for and raise a child with down syndrome.
If you choose the first option, the worst that can happen is that you loose your baby altogether. You have to ask yourself if you will be able to live with yourself if this were to happen.
I know that you were looking to hear from someone that has been through it but I hope that my perpective helps you. Only you can decide what is best for your family. And what is best for your family may not be best for the next. Anyway, if you wish to talk further please know that I am here for you.
S.
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A.O.
answers from
Philadelphia
on
I had an ultrasound with this baby (I am nine mos pregnant now) at 20 weeks and all of a sudden (although all my other prior ultrasounds showed no abnormality) the ultrasound doc told me that her nuchal skin fold was slightly thicker than usual that I should get an amnio to determine if she has Downs right away. I was taken aback! I immediately refused the amnio because I was not going to terminate the pregnancy at such a late date anyway regardless of what the results showed and I decided to do some research.
It turns out that everything I read said that the nuchal skin fold measurements become pretty unreliable after 18 weeks and that there would be other signs of Downs on the ultrasound to help determine risk (she had no other signs), AND the nuchal skin fold would have come up on earlier ultrasounds as thick (as Downs is not something that just appears later in pregnancy-it is there from the start).
I will tell you this, I was SO worried and it ruined my whole day thinking that the baby I just found out was my new little girl would have some sort of problem.
I became very angry with the doctor. He is the one that does the amnios and he was really pushing for it. I am glad that I said no and did research of my own. I think maybe it was a slow month for him or something. He wanted to schedule me for the next day right there in the exam room! a little too anxious for my "business" I would say. I had an ultrasound 2 weeks later due to some bleeding and he told me that time that he couldn't determine if the measurement was normal anymore because it was too late. 2 weeks later...hmmm...
I do not know yet if my child has downs or not but I would need several solid reasons to undergo an amnio, especially that late in pregnancy, which carries a higher risk of miscarriage. I will love my daughter no matter what and I wouldn't jeopardize her life just to know (after all, we will find out soon anyway).
I just wanted to share my story with you as it sounds very similar. I know it is too late (sorry, I just saw your post today) but sometimes it just helps to know that someone else has been there. These days I don't let docs or anyone else pressure me into anything-I do research on my own so I can make an educated decision. I suggest you do the same (talking to that genetic counselor sounds like a really good idea).
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M.L.
answers from
Johnstown
on
Sorry I'm late I'm new. My name is M. & i'm 25 yrs old single mother of a 4 1/2 yr old daughter her name is Mackenzie. We live in Johnstown, Pa... But i had the amnio done like uu said about but it didn't really hurt that bad. Just like crampy feeling & burning feeling when the needle goes in. Mine came back very good. How did yours turn up?? Hopefully ok. Let me know. Sorry I'm late about this email.
M.
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A.
answers from
Philadelphia
on
Hey there! I tested positive in the triple screen (1 in 80 chance of Downs) with all three of my kids. I did not have the amino with any of them and only considered it for the first. None of my kids are disabled There are characteristics of Downs that show up in the ultrasound. The pinky finger is different along with other things that the tech can spot. What you have to think about before you decide to go with the amino is it it really worth it? This is what my OB said to us when we considered amino with the first one. "Are you thinking of terminating the pregancy if the baby is disabled? If you are going to keep the baby no matter what, it's not worth the risk." I have been working in Special Ed for years. Also, my cousin has a 5 year old ball of fire with Downs. Downs is one of the easiest disablilities to adapt around. KIds with Downs now have such a strong chance of going on the have very fulfilling and independent lives. I have so much more info but I won't drag this message out any longer. Please feel free to contact me with any questions!!:) (____@____.com)
Good Luck!! A.
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L.A.
answers from
Philadelphia
on
A.,
I was also flagged with a high risk of a genetic disorder following quad testing. I understand how scary this can be. I think the important thing to do first is to answer a few questions for yourself:
1. How would you handle having a child with down syndrome?
2. Would finding out a positive result change how you carried your pregnancy?
3. Would anything positive come out of getting rid of any uncertainty? Would the rest of your pregnancy be full of anxiety if you did not know?
I ultimately opted to have the amniocentesis procedure because the disorder I was flagged for (Trisomy 18) was essentially fatal and our risk was so high. If your child has Trisomy 18, there is little chance for survival for even a few months. The severity of the disorder outweighed my fear of having an amniocentesis.
Children with Down's syndrome can have a very full life. You need to decide whether the definitive knowledge that you child might have this disorder outweighs the risks of an amniocentesis. Keep in mind that there are high numbers of false positives and that you probably have a perfectly healthy baby in there. Maybe you should talk to a genetic counselor first before you make your decision. Either way, they will have you talk to a counselor before the procedure. You can always change your mind after talking with the counselor. Remember that.
The amniocentesis was more mentally stressful than anything. I was confident in my decision. It was not painful and was over very quickly. At this point, it will be easier for the doctor to steer clear of the baby with the needle. However, there are risks associated with the procedure. But I found the actual procedure to be no big deal. The hard part was waiting for the results, which ultimately confirmed that our child was healthy and did not have the disorder.
Wishing you lots of luck.
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S.E.
answers from
Providence
on
Hi A.,
I've been there. I had a positive triple screen also, and I chose to have the amnio. If I could do it over, I wouldn't have had the triple screen (alpha feto protein) in the first place. In future pregnancies, I won't even get the test. Anyway, I had the amnio, and things turned out okay. The procedure itself wasn't pleasant b/c I had an anterior placenta (placenta was stuck to the belly-button side of my uterus instead of the backside where it usually is) and they had to go through the placenta to get to the fluid. There was some cramping and discomfort during the test. Hardest part is staying still. Afterwards, I had a little bleeding and cramping and ended up back at the Dr's but everything was okay. It took a full two weeks for the results, which was agony (but I think you can sometimes get results sooner--my sample wasn't ideal since it was bloody).
As far as whether or not to get the test at this point? It depends on what you plan on doing with the informaion. Is it possible that you may choose to terminate? If so, get the test. If not, you may not want to go through the ordeal. Remember, this is your life, and only you and your husband know what you can deal with (physically, emotionally, financially).
It is also true that almost all positive triple screens turn out to be falsely positive. VERY VERY VERY rarely do amnios come up positive (and usually only with those women over 35).
I know this is a difficult decision, and I don't envy you. Talk you your husband or partner and discuss what you plan on doing with amnio results. If you would never consider terminating under any circumstances, you may opt not to have an amio. If you're not sure, maybe you should.
If you have any more questions, please email me at
____@____.com. I should also mention that I am a maternal child nurse, so I've heard very similar stories many times. You should also ask your Dr if he/she can refer you to somewhere where they can do a level II ultrasound which may give you enough information to determine your course of action.
Good luck A.. You'll make the right decision.
-S.
p.s. In January, I gave birth to a 100% healthy happy baby boy named Jack with NO traces of Down Syndrome!
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L.
answers from
Providence
on
HI A.-I was also told that there was a higher chance for my 1st born son to have downs. I was as frightened as you are right now. We opted not to do the amnio b/c we knew no matter what we would not terminate-and there was a greater chance for us to miscarry the baby than there was a chance for downs-not a risk we were willing to take. I felt so much better after the level 2 where they told us he was fine as far as they could see from the visual markers they look for. and we were blessed w/ a perfectly healthy baby boy who will be 2 next month...i know it is an awful shock when the preg has been so perfect-but try not to worry so much. there are truly so many false positives-the downside to modern medicine-they want to make sure no one falls through the cracks-but that means unecessary worry for most. Good luck w/ whatever you decide-my experience has been that it will all be fine in the end. take care-i hope you get great news- L.;)
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J.
answers from
Portland
on
This is something only you can decide, but when we (my husband and I) were told about the tests we decided not to. One, the needle would have done me in, but also my doctor said that the tests could come back and show everything was fine and not really show everything, or it could suggest something was wrong and then we would freak out and everything would be just fine.
For me, i relaized that nine months would not be enough time for me to learn and understand what i faced so why rob ourselves of of the joy or pregancy by worrying?
I hope this helps, but again it is a personal choice. I hope that whatever happens your baby is happy and healthy.
jess
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Y.
answers from
Springfield
on
Hi A.,
My name is Y. and I have a 15 month old baby girl. I had the Ultrasound with Amniocentesis test done down at Baystate as I was basically given the same information and was age 40 with my first child. The test itself was a little uncomfortable but nothing unbareable. Knowing the results gave me comfort that my baby would not have down syndrome and ruled out some of the other possible genetic disorders. I would just make sure that if you decide to have the procedure that you go to a place like Baystate, where it is more routine and the doctors have performed the test many times. I wouldn't be very concerned with miscarriage as the test is done very precisely and I don't believe that the risk lasts through pregnancy??? I would get a another opinion on that statement. After the test you just need to rest and take it easy for a day or so.
Hope this is a little helpful.
Y.
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S.L.
answers from
Philadelphia
on
This is a little late. But I was told I had the same risk. 1 in 178 to have downs. I am only 26, was 25 at the time. And it was totally a shocker. If you plan on keeping the baby no matter what I suggest to wait and see. If you are considering an abortion than I would say to do it. We waited and everything was fine. My daughter is completly healthy and normal. For us, there was no question, I was gonna keep the baby and didn't feel the need to put us or the baby at risk. Also keep in mind that the test they do end up with a lot of false positives. Next pregnancy we will deff not be taking that test. There is no need for the extra added stress! I wish you the best and I hope all turns out well for you.
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M.K.
answers from
Buffalo
on
Hi A.,
Well, i am sorry to respond so late to your question. But, I have a little bit of a different perspective on your situation than most of the other moms that responded, so I decided to respond anyways. I was 25 the first time i got pregnant. After a routine dating ultrasound ( which ended up being 8 weeks into my preg.) my OB called me and said that I needed tp see a perinatologist because my baby had a thickened nuchal fold. I was unsure of what that meant, but wan't really concerned. I went for the nuchal translucency, and based on my results was put into a risk of 1/263 of having a baby with Down's. they told me I had to do the triple screen, which I wasn't going to do before. The results of that showed that I was at 1/13 risk of having a baby with Down's. I was heart broken when both the perinatologist and my OB insisted that I have the amnio. I work with developmentally disabled children, and I decided that I would have my baby either way. I decided only to have the test ebcause my OB told me that if the baby does have Down's there are things that they can do in utero to reduce the risks of having further health complications. Also, there is a chance when you get the screening results back that there are other geneitc disorders. My OB told me that I was at an increased risk of having a baby with trisomy (I think it was like 13, or something like that). Anyways, I was petrified, and cried on the table during the entire procedure- which wasn't really that bad. And, in the end, it was determined that my baby DID have Down's. I guess for me it was a double edged swrod. I was depressed for the rest of my pregnancy and worried about what the future would hold for my little girl. But at the same time, I got that part out of the way during my pregnancy. When she was born, even though she does have down's, I was able to focus on enjoying her. Sure it is hard at times, But I know other moms that didn't know until their child was born, and for that reason they were unprepared, and had a sense of mourning. That takes away from your chances of bonding with your child. I have no regrets for doing it the way I did. I had the opportunity to read up and do all of my research, and when she came, it wasn't a surprise that she had a hear tproblem, and hypothyroidism, and wasi nthe NICU for five days, etc. I can't make a decision for you, but I guess nobody wants to walk through life unprepared, so this would be the only way to prepare you and your family.
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K.
answers from
Boston
on
A.,
I had an utltrasound with amniocentesis. I was 40 when I had my first child and they felt I should, I debated and then was told by others to just make sure the person giving you the ultrasound and the amnio had given the amnio numerous times. I was with a high risk doctor, being of advanced maternal age, as they called it, I questioned him throughly and made sure he was the one giving me the amnio, it went really well and I had no problems with the test or the rest of my pregnacy. the amnio doesn't give false positives, as I was told, the blood test that called CSv or something like that does. They gave me the results and everything was as they said. I had a wonderful baby boy, who is now 10 and doing great. I am sure whatever your decision, it will go well. My delivery was horrible but he was big and my first at forty. He was great and healthy
I hope this helped somewhat.
If you have any questions, feel free to write,
Good thoughts,K.
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L.
answers from
New York
on
sorry just read the email and i know its too late but i did have the test.as you already know it does hurt a little and you will have cramps which is normal.you can also find out the sex of the baby with it.every thing is probably fine they just like to be sure.i think its just to torture you. when they did mine it was because on the ultrasound it looked like there was a space above the spinal cord which could mean downs but every thing turned out fine.good luck
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T.R.
answers from
Scranton
on
My boyfriend and I decided not to have the testing done, we thought there was too high a risk of miscarriage. It wouldn't have mattered to us anyway if he were born with special needs. But, God blessed us with a perfectly healthy beautiful baby boy after a very difficult pregnancy. You never know.
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D.
answers from
New York
on
Hi A.,
I understand your concerns about having an amnio done. I was 40 years old when I had my first & only child. I had to have an amnio/ultrasound also. They told me there was a 1% chance of having a miscarriage with this procedure. I trusted my doctor which is very important. They first numb your belly with a needle (feels like getting novacaine), then they insert the needle to draw the amniotic fluid out. That needle you can't feel. The ultrasound if you've never had one, is safe. They just rub a jelly over your belly and maneuver the strobe over it so they can see what they are doing.
I was a little nervous, but like I said I had a lot of confidence in my doctor. My husband also came with me & stayed in the room during the procedure, you should have someone with you. In my case, I needed to know ahead of time what we would be facing as far as having a child with down's syndrome. We needed to be prepared, but I have friends who did not want the test & took their chances. I felt safe having it done & it took off the pressure of waiting until the baby was born. I know that not all tests are 100% accurate, but nothing in life is. I have a beautiful son who just turned 12 yrs. old & I wouldn't have changed a thing.
If you want to talk to me let me know & I will send you my phone number/personal e-mail address. Good Luck in whatever you decide. D.
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J.
answers from
Harrisburg
on
I was in your situation (except that the AFP test that you took was too high instead of too low for me, indicating an increased chance of spina bifada.) I opted not to get the amnio for the reason you state - the risk of miscarriage. After I refused, they retested me for AFP twice more and the third time it was normal. My baby was born perfectly normal and is a very healthy 11-yr-old today.
In my case, I wasn't willing to consider abortion even if the doctor had assured me that the baby was indeed imperfect. It just wasn't worth risking his life "to know for sure".
It's true that I worried a little during the pregnancy after that, but I certainly don't regret the decision I made now! I'd make the same decision again.
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J.A.
answers from
Lewiston
on
Hi A.!
From what you've said, I get the feeling that whatever the test results you would keep the baby. If so, I definitely agree with some previous posters that if your child having Down's would not change your mind, there's no need to get the amnio.
I would say go with the ultrasound and leave it at that. If you did the amnio and ended up doing harm through that, you'd probably feel worse about it.
As for what other people say, tell them to stuff a sock in it ;) Ancedotal evidence is about as valid as a fart in a windstorm, ha! :D
Enjoy your pregnancy!
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M.A.
answers from
Pittsburgh
on
First of all, I am so sorry that anyone has frightened you by saying such an awful thing, even if just teasing. Every pregnancy is different and just because it is more complicated doesn't mean your baby will be any less healthy. Any way about the question at hand. I have had three pregnancies in which we had such scares. With two of them I opted to have the ultrasound guided amnio. It is uncomfortable, but not as painful as you would imagine, although it will make you wince. The worst part is the anticipation, especially after seeing the size of the needle (just to be honest). They use the ultrasound to make sure that the baby is a safe distance from where they are placing the needle and depending on the machine they use, the needle may even be inserted through a special hole in the ultasound head to ensure proper placement. With my first, I did have some cramping (very mild), but nothing with the second. I didn't opt for the amnio with my third pregnancy, because I wasn't worried about it, but I was withthe other two therefor I wanted to put my mind at ease. I have friends and family who altogether have had the procedure a total of six times, eight if you include my two and mild cramping has been the worst complication. No miscarriages, even in those of us who have had history of miscarriages. If you are worried about the results, it really can give you a great sense of relief and asking for FISH results, which are a stained result on certain chromosomes the Down Syndrome included that comes back in days instead of weeks (but sometimes isn't covered by insurance. However with detailed ultrasound alone and a skilled technician, there are also many markers that can be checked to see if further testing is necessary. For instance they can check the eye spacing and I can't remember what the other is, however these are measurements that take place closer to the 20 week + mark. If you are thinking of terminating the pregnancy with a positive result, you may want to do the amnio as soon as possible to make things easiest. However if you are doing the testing to prepare yourself to deal with a special needs child and are hesitant to proceed with the amnio, maybe waiting to have a more detailed ultrasound to check for down syndrome markers would be a better option (just something to discuss with your care giver). Tri screens do have a high false positive rate considering they are only a screening tool to check for possibilities, but they are in no way a diagnostic certainty. I hope this has helped, I have been there, 3 positive triscreens and one child diagnosed with spina bifida. If I can answer any more questions on this please feel free to ask!!!
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L.W.
answers from
New York
on
a few things to think about
1) will it change the out come of having the baby.
2) will you understand that the test can be wrong (it was in my sisters case)
3) did the doctor say you absolutely have to have the test.
4) will the test resolts change your mind about anything.
I know repetative but you need to really think about all this and talk to another doctor. in case ur uncomfortable.
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A.Q.
answers from
Hartford
on
Hi A.
With my 3 1/2 year old i had genetic testing done. They told me that there was a very high chance that the baby would have down syndrome and I would have to have the amnio to find out definately. It wasn't an option for me because of the chance of a miscarriage. It didn't make a difference to me whether she had it or not. I wanted her no matter if there was something wrong or not. I was just trying to educate myself and be prepared but the risk out weighed that for me. I think it is a personal preference on how much of a difference it will make in your future decisions. And my test was a false positive. My daughter is heallthy and normal. With my second I opted not to have that test done again!!!!!!
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B.
answers from
Washington DC
on
Hi A.,
I was told that I should have the same test as well back in 2003 when I was pregnant with my third child at the age of 42. I told them know and that I trust in God and I did not want to take that can of risk. My daughter was born on June 1st at Johns Hopkins and is healthy and I thank only God.
The decision is yours, but if you feel that it's something you do not want to go through with, then pray about it.
Good Luck and God Bless you and your family.
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C.
answers from
Portland
on
Hi A. - I had my first and only at 42. Everything about my prgenancy was scary. I had a great doctor that I trusted making the whole 10 months more bearable. When he sugested amnio my concern was more about the results then the testing. I was confident that the test was safe. Yes, it was a bit uncomfortable...what isn't about pregnancy? :)
When I got the results that I was having a girl - I cried. I immediately named her after my grandma. I was so happy. Then we were lucky to find out she had a normal test.
I still worried right through the delivery, the first three days in the hospital, through the first of several "well visits" and vaccinations and visions of when she rides her first bike. I guess I want to say to you that every baby is perfect! It is a mother's right to worry and want the best. The best is what you give... C.
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C.R.
answers from
New York
on
Hi A.,
I have had many friends who have been told that they need to have the amino done and they did and all delivered healthy babies. I also know of someone who had the amino done and was told her that the baby would have down syndrome and the baby was born perfectly heathly. I would talk to the genetic counselor first and let him/her tell you your chances based on your and your husband's family medical history.
Good Luck!
Cathi
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A.
answers from
Washington DC
on
A.,
I totally understand what you are going through. I had the same procedure done and not to scare you...it hurt like @#$%*@@# !!! I didn't have enough fluid so the DR had to wiggle,push,jab that needle until she could get enough fluid to test. I had the test done due to my age at the time,I was 38. I went home and just stayed in bed for 3 days. My husband was there through the whole thing holding my hands. The good thing that came out of it is he said after all that I can name the baby anything I wanted to. I named him after my Dad and Grandfather!!
Jack was born at 35 weeks weighing a whopping 3 lb 7 oz. Just a tiny little fella now he is three and is perfect!!
I would go through it all over again. It's like childbirth, you forget the real pain. I know alot of women who have had it done without problems. I highly suggest you drink, drink,drink so much water you feel like the Atlantic Ocean. It will help when you have the procedure done. Just remember to breathe.
(sorry about the grammer,it's 2:30am and I am exhausted. I just finished a long video game session with my 12 year old son)
I wish you all the best.
Nancy
Gainesville,Va
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C.W.
answers from
Providence
on
Hi,
Sorry so late in responding to your question. Both of my children screened positive for Downs. I refused to put them at risk with an amnio. Both of my children (6 & 2) clearly do not have downs. My doctor told me that over 80% of the babies thet screen + for Downs don't have it. I won't deny we had some a number of tears shed to think our child would have more struggles in life than many, but we never considered terminating our babies life because of thee "what If". Hopefully your appointment went well today. Whatever choice you make let it be one you are comfortable with & won't regret. I also have a friend who had an amnio done & the results came back that the baby had Downs, However her son(now 6 months) does not have it. Hope this helps. C.
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C.
answers from
Hartford
on
A.,
I had the same exact odds of a down syndrome child given to me three years ago. At that time, the chances of having a miscarriage through amnio were the same as my odds of having a down's baby. My pediatrician recommended an intensive ultrasound with someone that was vey experienced with reading ultrasounds. Specifically, the doctor looked for indicators of unusual development in the fetus. Based on his experience, he did not feel that the child was at risk for down syndrome. My son is currently 2.7 years old with some developmental delays -diagnosed as mildly autistic. He is adorable & highly intelligent. In short, he does not have down syndrome, but I have wondered if the maternal serum test was possibly an early indicator of his autism --- all the docs never heard of such a connection. Anyway, that is my experience. Feel free to contact me if you would like to discuss it further.
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M.B.
answers from
New York
on
Hi A.,
The question I would ask is, what would you do with this information? Would you terminate the pregnancy IF there is a 1/whatever chance your baby had downes syndrome? Or would you use the information to educate and prepare yourself for the 1 in whatever possibility that your baby MIGHT have downes.
I am a post partum doula who knows three people personally that was told that possibility. Two chose not to have the amnio because they would not terminate the pregnancy no matter what and opted for another ultrasound, the third had it..and all three, the babies were absolutely FINE!
A personal story. My daughter was told from the fetal protein test that our grandbaby had a 1 in 100 chance of having TRISOMY 18, a serious and often fatal genetic disorder. She refused the amnio because she would not terminate and her reservations about the procedure. She opted for the level two ultrasound, (more like a 3-d ultrasound) which showed her son was just visually FINE. They still told her she had time for an amnio and to terminate 'legally'. She said NO.
Jaidon was born at 40 weeks full term, a beautiful wonderful baby boy, alert and scoring 10 on his apgar! He is now 3 1/2 months old, reaching for toys and putting them in his mouth, vocalizing and laughing... all ahead of textbook development.
I do have friends and clients that have amnio with no adverse affects.
And if your baby does have downes, it is a gift because Downes children are the most amazing and love filled children, I know two personally that are just joyful and loving and always smiling and hugging.
I myself have raised a child, now 22, with a major seizure disorder. So I do know about having a 'different' child.
I see from your post that you probably had your appointment already.
Please do give us an update!
fond regards, M.
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A.C.
answers from
Boston
on
Hi A.-I had an abnormal AFP with my son and after speaking with the genetic counselor, who recommended an amnio, we decided to wait to see what, if anything, came back on the ultrasound & then decide. The ultrasound showed nothing and I have a beautiful 2 y.o. boy. Good luck!
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D.
answers from
New York
on
I did not have amnio with my pregnancy. I had my son at 29 and other then the gestational diabetes, my pregnancy was cake. However, I have to say that I agree with the other mom's here. If the results came back positive for you to have a down's baby, what would you do. If you decide that you want this child either way, why does it matter what the results are. You could be risking more than it's worth, for a child that is truly loved either way. And remember, God never gives us more than we can handle. It may not seem that way at times, but you will survive. You just need to decide what's best for you and your family. Either way, it is your choice.
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M.
answers from
Providence
on
Dear A.,
When I was pregnant with my daughter (who is now almost two), I had to do the ultrasound test you're talking about (it's a second level ultrasound that is more powerful and accurate than the one you had at you OB-gyn). They found some cysts in her brain cavity and that increased her risk for trisomy 18 (a chromosomal disorder more severe than Down syndrome). Her risk of actually having the disorder was about 1/100. It was all a false alarm, bceause she is now a happy very healthy little girl.
You should not be afraid of the ultrasound test. There are no risks for your baby and it can decrease the odds of your baby having Down. They make measurments of the baby and there is a genetic counseler there that explains everything. I had mine at Women and Infants and they were great. Depending on the ultrasound results they ask you wether you want to have the amnio or not. I would recommend to do the ultrasound and than depending on the test results decide if you want to have the amnio. We decided not to have the amnio after our ultrasound results because everything looked fine and it turned out to be fine.
So don't worry too much (i know it's impossible not to worry) and go for the ultrasound and see from there. Good luck!
M.
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E.K.
answers from
Allentown
on
Hi, A.!
You must be terribly concerned. I remember the first time I had an abnormal screening. I think I cried for then entire 2 weeks that it took for my amnio results came back. This was baby #3. I don't know what terrified me more, not being guaranteed a healthy child or having a test done that could possibly put my pregnancy at risk. The screening that put your baby at greater odds for having a neural tubal defect is basically someone calculating stats like your age, weight, etc and some blood work to give you a number that makes you stress needlessly. By my 5th pregnancy I didn't waste any time. I told my midwife not to even bother ordering all those silly tests and risking abnormal genetic screening for the third time. I went straight for another amnio. I knew that the baby was healthy like all the others but there's always that little twinge of doubt in the back of my head. The procedure itself is pretty fast and just a little uncomfy. It really wasn't as awful as I thought it would be. The sono tech will use the monitor to get a pix of the baby's angle and the doctor will use that image to guide him/her with the placement of the needle. He/She will withdraw a few cc's of amniotic fluid and that's that! Make sure you take it easy for a day or 2... no lifting your other child or anything heavy and definitely drink lots of fluid to help replace the amniotic fluid that was taken. The hardest part is waiting for the results. Ask the person who is doing your test if they do FISH tests which is a preliminary reading of the results that take only a few days instead of a few weeks. With the FISH results some of the answers you are looking for will be given to you but the official results take about 2 weeks. Thank God my amnios were uneventful and the remainder of my pregnancies were fine. Just be sure you follow your providers guideline and you should be okay as well. You still have a few months to go so relax and enjoy your pregnancy! Best of luck to you! I wish you a safe and healthy pregnancy and labor.
E. ;)
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R.S.
answers from
Providence
on
I have never personally had this test done. However, I did know someone who had an amnio & they found a genetic disorder. Her baby is happy & healthy & you would never know there was a problem of any kind. It's none of my business, but if you plan on keeping the baby either way, I wouldn't put yourself through it. You'll know all in due time. I would just learn as much as you can about Down's & be prepared for either outcome. If you want to leave your options open, then it might be worth doing. Also, you may want to find a support group for parents with special needs children & see there opinion on finding out first. I hope I'm not overstepping. Good luck to you & keep in mind that there is 177/178 chance that your baby is perfectly fine.
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K.
answers from
Philadelphia
on
A.,
I was in your exact situation. I did not find out just how many false positives this test has until after I was scared into having the amniocentesis. I guess the risk is always there to have a baby with down's syndrome, however, you have to decide ultimately what you would do with the results of the test. To be blunt, if you would have the child regardless of the outcome of the test, then I would say don't have the test. If you would consider otherwise based on the test results, then have the test. I found that my doctor did not inform me of the high amount of false positives obtained with this test. It is a tough decision to make. I had the amnio and was fine but there is always a risk. Looking back, I wish I had not had it done. It was a grueling 2 weeks waiting for the results and my daughter turned out to be just fine. I hope this helps. Good luck with everything.
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M.S.
answers from
Philadelphia
on
Hi A.,
My name is M.. I am a mother of two and had to have the amnio twice. My daughter who is my first was my easy baby. I had to see genetic specialist from two months on for the same reason. I waas scared and did a lot of research. I had the amnio and it was more uncomfortable then painful. I was on bed rest for three days and felt alright the rest of that pregancy. The amnio showed she was a healthy girl. My second pregnancy with my son started off rough in morning sickness and then I was faced with the amnio. Again it came back fine. This time I was on bed rest for a week and my son's heart rate continued to stay high. I went into premature labor and had my son seven weeks early. He is a big healthy boy now. The amnio is more nerve wrecking then anything to me. It is uncomfortable, but it is informative. Was it your triple screening blood test that has made the doctor request the amnio?
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K.
answers from
Philadelphia
on
Dear A.-
I had amnio at age 38 no problems- great results.
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C.
answers from
Erie
on
A.,
I have not had the ultrasound with amniocentesis but have had 3 pregnancies with multiple complications on the first 2. I would ask myself the question, will the results of the test change what you will do with your pregnancy? If it is your child to love with or without downs syndrome, is it worth the risk to have the test. My first child had multiple birth defects that I found out about just hours before delivery. Had I known months before I wouldn't have done anything different. God gives you strength to deal with it. I don't think that if your first is "perfect" that it sets you up for complications. Some women have lots of children with few or no problems, others have a few with lots of complications. I don't think there is any relationship. I will never know about the perfect pregnancy.
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M.
answers from
Washington DC
on
Dear A.,
Don't worry!!
The numbers are only a statistical measure. I was in the same situation last year. The real problem is that the antibodies that are used to measure the level of the protein are not clean, so the test is kind of "quick and dirty". The other big problem with that test is that the algorithm that has been developed to give you that final ratio is skewed by age. If you are over 35, chances are that the ratio will look like the baby has a possibility of Down's syndrome. Sometimes, insurance will not pay for the amnio unless the blood test indicates a need for it. I am not sure why the algorithm is skewed that way, it just is [I have a Ph.D in genetics and my friend worked in the company that developed this test]. Also, this blood test is not FDA approved. It is only a benchmark.
The follow-up amnio is a good idea since it will give you peace of mind. Make sure to get plenty of rest that day and lie in bed. Again, the chance of a mis-carriage is also a statistical number. Chances are that your doctor is skilled and nothing untoward will happen.
Take rest and take heart, your baby will be fine.
Sincerely
Mythri
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K.B.
answers from
Providence
on
HI A., I have 2 girls . I had an amnio's with both of them.
I am in my late 30's , and had my kids when I was 36 and 37. My husband and I decided it would be wise for us to have an amnio for both pregnancies due to my age. I must tell you that the 1st one did not hurt at all, you do not feel the needle going in and it was not bad at all. I had no problems. The second one was a bit more painful due to the position of the baby. She was in a weird position and due to that, they had to almost stick the needle what felt like thru my belly botton. It was not thru it , but very close to it. I can tolerate pain very well, but that was very painful ! They had to stick me 3 times with the needle on the 2nd amnio to get a correct position so as to not stick the baby. They do not give you any numbing drugs so you will feel everything. The results tell you everything ,we also did a test called a "FISH" test. That I think tells you if the baby will have spinabifida. But it is worth it, they can do that one with the same fluid as the amnio, they don't have to stick you 2x. For us, it was worth it. My kids are both normal ,healthy and I did not have any regrets. But it is a personal choice only you can make. Good luck and best wishes whatever you decide.
K.
K.
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J.M.
answers from
Philadelphia
on
I had the test done with my daughter. The testing showed there was a slight risk for Downs so I went ahead with the amnio. Everthing went fine(it was done in Limerick). The first day you aren't suppose to do anything. The down side is it took almost 3 weeks for the results. That is 3 weeks os extra stress of not knowing. The outcome was a very healthy daughter who is now 3.