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  • Distressing test results :( ( sensitive )

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    Old 05-18-2004, 12:43 AM   #1
    haleysmum
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    Unhappy Distressing test results :( ( sensitive )

    Hi , I really hope someone can give me some info and advice...I had a nuchal scan and blood test last week and got the results back that I am at increased risk of having a baby with down syndrome....They say 1 in 9, so 8 babies born fine, one has down syndrome...To me this seems like not very good odds They have strongly recommended I have an amnio done, but have to wait till I am 16 weeks, so another 3 weeks away, then I have to wait another 3 weeks to get the results This would put me at 19 weeks....I spoke to a head honcho today who is going to put me in contact with a genetic councellor , hopefully tomorrow morning......He said they may be able to offer me some tests earlier....The reason I am so distressed is because I dont think I could go forward with the pregnancy.....I already have a baby almost 8 months old and just dont think I could handle it....I am so so scared and upset, I can barely see this screen to type I am crying so much If anyone else has gone through similar or knows someone who has please reply......I really need all the encouragement I can get right now Also I know I may be judged on what my decision would be, but I need some objective opions and advice ....PLEASE HELP ME !
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    Old 05-18-2004, 03:58 AM   #2
    Aunt-Bon
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    Re: Distressing test results :( ( sensitive )

    I would'nt jump to any conclusions just yet. Alot of times the tests come out with positive results and end up just scaring the expectant mother. The trans test you had done and the AFP test can come back positive and everything is fine. I know people personally who have gone through this. One friend of mine they told her she would have a severely retarded child she now has a 6 year old healthy little girl.

    Good luck with the amnio, keep us updated.

    Siobhan
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    It's a girl

     
    Old 05-18-2004, 04:36 AM   #3
    cee27
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    Re: Distressing test results :( ( sensitive )

    someone I work with thought her baby was going to have DS, but the test was negative her numbers were off because they didn't take the test at the correct time....I understand your concerns....don't let it stress you and pray

    keep us posted

     
    Old 05-18-2004, 05:16 AM   #4
    haleysmum
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    Re: Distressing test results :( ( sensitive )

    Thankyou for the replies.....I actually had a genetic councellor from another hospital contact me tonight and at least I wont have to wait 6 weeks to find out....She said that they would definately go by my last ultrsound in determing how far I am, last week they told me I was 12 weeks 5 days, so as of today I am 13 weeks 4 days, she says that their hospital offers the amnio at 15 weeks and can get what is called a rapid response within 48 hours to tell me if the baby definately has down syndrome, she said if it comes back normal that of course that is encouraging results, but they wouldnt know 100 % percent for 7 to 10 days.... A lot better than what the hospital I have been going to told me ! A little confusing I know, but at least I would know definately within 48 hours if the baby DOES have DS , but wouldnt know definately that it hasnt for up to 10, a lot better than having to wait another 6 weeks.......I am just so frightened Anyway I really need to rest, I am so exhausted The genetic councellor is going to call me back tomorrow afternoon, so hopefully I will know a little more then about when and what tests are going to be done ......
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    Old 05-18-2004, 05:21 AM   #5
    cee27
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    Re: Distressing test results :( ( sensitive )

    Quote:
    Originally Posted by haleysmum
    Thankyou for the replies.....I actually had a genetic councellor from another hospital contact me tonight and at least I wont have to wait 6 weeks to find out....She said that they would definately go by my last ultrsound in determing how far I am, last week they told me I was 12 weeks 5 days, so as of today I am 13 weeks 4 days, she says that their hospital offers the amnio at 15 weeks and can get what is called a rapid response within 48 hours to tell me if the baby definately has down syndrome, she said if it comes back normal that of course that is encouraging results, but they wouldnt know 100 % percent for 7 to 10 days.... A lot better than what the hospital I have been going to told me ! A little confusing I know, but at least I would know definately within 48 hours if the baby DOES have DS , but wouldnt know definately that it hasnt for up to 10, a lot better than having to wait another 6 weeks.......I am just so frightened Anyway I really need to rest, I am so exhausted The genetic councellor is going to call me back tomorrow afternoon, so hopefully I will know a little more then about when and what tests are going to be done ......
    what does the father say about everything?...you said you don't think you can handle it if the baby has DS..how does he feel?

     
    Old 05-18-2004, 05:43 AM   #6
    haleysmum
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    Re: Distressing test results :( ( sensitive )

    He wants me to have the amnio...He is 46 this year and had doubts about the baby to begin with, says he is too old So faced with the thought of a disabled child terrifies him
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    Old 05-18-2004, 05:46 AM   #7
    cee27
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    Re: Distressing test results :( ( sensitive )

    Quote:
    Originally Posted by haleysmum
    He wants me to have the amnio...He is 46 this year and had doubts about the baby to begin with, says he is too old So faced with the thought of a disabled child terrifies him

    yeah i understand that.....

     
    Old 05-18-2004, 05:56 AM   #8
    bren7
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    Re: Distressing test results :( ( sensitive )

    I do understand how difficult this is for you. Honestly in my opinion, take a deep breathe, and wait of the amnio result to come back. There is a GOOD chance the orignal blood test was a false positive. Then you would have worried for nothing. Just take it one day at a time, hope and pray for the best, this is all you can do right now.

    If it does come back that the baby does have DS you will make the best decision for you and your DH and this baby. This is only a decision you and DH can make, this is not for anyone else to make that decision for you, never let anyone critize you or give you crap on a decision you have to make.

    Basically here is my story in a nut shell.

    I have been through this, the AFP test came back positive for DS. My dr order the amnio right away, I when into his office a couple days later and had the amnio done. I was hoping the AFP test was a false positive, but the only way to know for sure was to have the ammino. I had the amnio done. My dr called me with the results the baby had DS, NOT the normal trisomy 21 type DS, he had 3 21 chromosomes, 1 was attached to the 14th chromosome. We were then sent to a genetic counselor to see if DH and/or I were carriers. We were told there were 2 types of DS that our child could have, 1) a mutation (de novo or translocation) or 2) it is inherited. We had the blood test done and waited, DH and I do NOT carrier this, so our child had a de novo type DS.
    De novo basically means a mutation in the genes, no other relatives or any of my children will be at an increased risk. Basiclly I won the lotto, I don't remember playing, the Dr said it was 1 in I dont remember how many billion babies this would happen to.

    I know how you feel, I was in tears for a long time.
    [removed]
    My thought and prayer are with you.
    Keep us posted, let us know how the amnio comes back.
    Take care
    Bren

    Last edited by Moderator BAC; 05-18-2004 at 06:27 AM. Reason: Do not discuss abortion issues on this board. This is a pregnancy board! Read my "sticky's" at the top of this page!

     
    Old 05-18-2004, 06:04 AM   #9
    Chayce's mom
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    Re: Distressing test results :( ( sensitive )

    Hi Haleysmum,

    I understand how scared you are right now and I am so sorry you have to go through all this worrying. My five year old son Chayce has Down Syndrome. I did not know Chayce had DS until he was born. I was only 25 and my AFP and two ultrasounds were normal. I honestly don't know what I would have done if I had found out while I was pregnant. Now that I have Chayce I would not trade him for all the "perfect" children in the world. He has enriched all our lives and made me a much better, more understanding person.

    With my second pregnancy they said my chances for having another trisomy (having three chromosones instead of the normal two) child was 1/100. I decide to have an amnio, I couldn't go nine months without knowing. I wanted to have my answers as soon as possible so more options were available to me. My doctor said the earliest she would do an amnio was 14 weeks. She also said they could do a FISH test (Fluorescence in Situ Hybridization) which test specific chromosones for trisomies. The FISH test can only test for a few chromosones at one time so for me they checked 21, 18, 13 and the sex chromosone. Results are ready in 48 hours but the full karyotype takes 10 to 14 days. My results were normal and I now have a beautiful, healthy "typical" 13 month old daughter.

    My advice is try to be open minded, I understand the unknown is very scarey. It takes a brave person to face it head on. I know it is easy for me to say all this now, I don't know what I would have done if I were in your shoes. Get all the information you can before you make any decisions, knowledge is power. I am not a religious person but I do believe my son was given to me for a reason. [removed] I hope your test results are normal.

    Best of luck to you and your family,
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    Last edited by Moderator BAC; 05-18-2004 at 06:25 AM. Reason: Do not discuss abortion issues on this board. This is a pregnancy board! Read my "sticky's" at the top of this page!

     
    Old 05-18-2004, 11:23 AM   #10
    haleysmum
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    Re: Distressing test results :( ( sensitive )

    Thank you so so much for your replies.......I am crying again Its only 3.30 am here....I have been awake since before 3 just laying there tossing and turning ......I can see a lot of this over the next couple of weeks This situation is so incredibly hard......Things have been very very rocky between my partner and I the past couple of weeks, so I feel like I have been run over by a train right now.......Like I said previously my partner wasnt completely over the moon about this baby to begin with...Our daughter is only 7.5 months old, so this baby came out of the blue for us....My partner was told 16 yrs ago after being injured in an accident he couldnt have any more children......Dont get me wrong he loves Haley with all his heart, but was totally freaked when we found out I was pregnant again....I guess he didnt expect to become a father again at this late in his life....I personally think he should see both our babies as a gift from god......That is how I have looked at it anyway......I have already been terrified that he will leave me if the pressure got too much, and now this has happened I just dont know if I could cope with a handicapped child and my daughter ALONE I am just hoping and praying right now, thats all I can do.....Again thanks for the replies and please keep them coming......I am interested in hearing replies from women who have gone through this and what their decisions were either way and how it affected their lives.....
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    Old 05-18-2004, 11:25 AM   #11
    haleysmum
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    Re: Distressing test results :( ( sensitive )

    Also any info about amnio would be great too......I am terrified about that too
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    Old 05-18-2004, 12:41 PM   #12
    bren7
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    Re: Distressing test results :( ( sensitive )

    Amnio really isn't painful. It is over very quickly. The hard part of the amnio is wondering what the result are going to be. I hope everything turns out for you, your DH and baby.

    I understand your worry about your DH but some times men will surprise you. You and your DH are going through alot right now, give it some time, you and he will have to just take things one step at a time til you know for sure.

    Good luck and Take care

     
    Old 05-18-2004, 03:33 PM   #13
    Nemrac
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    Re: Distressing test results :( ( sensitive )

    Okay I didn't read everyones replys, but I was wondering if you had the tripld screen (AFP test) done?? if so 13 weeks 6 days is way to early to have it done, and you will get odd test results. I had mine done the earlist you could and that was at just about 16 weeks. Please don't worry yet...all the test does if you give the chance of something being wrong so there are 8 chances everything is fine. I opted to not have a amnio with Victoria and had Fetal MRI and other test done. She did not have downs though she had anacephaly. Please don't give up hope since like I said all the test does is give you a chance of something going wrong not a positive or negative. Did you know that even women that have a 1 in 1,000 chance of it happening still end up having babies with downs?? The main reason you take the test is so that you can take the steps you need to do to make sure your baby is safe. Meaning that if your baby did end up having downs you would deliver at a high risk hosptital or like me I would of delivered at a high risk hospital with Neonatal personal waiting. With all that said do not give up hope yet. I hope everything turns out fine.
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    Old 05-18-2004, 04:47 PM   #14
    haleysmum
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    Re: Distressing test results :( ( sensitive )

    Hi nemrac, no it wasnt the afp test, it is some new test they do called nuchal translucency which measure the fluid behind the babies neck and also a blood test.....this test is performed between 11 weeks and 13 weeks 6 days.....I came back with quite a high result ie some women may told they have a 1 in 50 or 1 in 100 chance etc, my result has come back 1 in 9, but your right I am not giving up hope just yet.....I speak further with the genetic councellor this afternoon and I want it looked into wether diabeties can affect results, I have been searching the internet for hours and have come across a couple of sites that say diabetics on insulin CAN get an inaccurate result...I just spoke to another doctor at my hospital and she says this isnt the case I tell ya you read and get told so many differing opinions....Anyway I will more than likely be changing hospitals, as the genetic councellor I spoke to last night seemed a lot more informative and can get me an answer quicker......Thanks for your reply
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    Old 05-18-2004, 07:52 PM   #15
    Nemrac
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    Re: Distressing test results :( ( sensitive )

    Okay wasn't sure. I can tell you that I talked to 7 doctors other than my doctor (he is not a specialist for pediatric care, but the rest were) I say talk to as many doctors as you need to. I hope that everything turns out okay for you.
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