1st Trimester

Has anyone opted for the testing for Down's?

If so, was it worth it? My friend did it with her firat and it came back that her son had Down's Syndrome. He doesn't.

From what I've read on it, it's not very reliabe. Just curious about any experiences you all have had.

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Re: Has anyone opted for the testing for Down's?

  • Perhaps her doctor didnt give her the odds. She told me they told her yes. She had to wait a week or so (and was very stressed out from it) and then later found out he didn't.

    I opted to not have it because my deductible is crazy. $4800.

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    Bliss+Berry
  • I opted out both pregnancies...we didn't have any risk factors and didn't want the extra stress since it only gives you probability.
    J13 May Siggy Challenge: People lacking in common sense raise my blood pressure.
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  • I didn't have any of those screening tests. I would never get an abortion so DH and I wouldn't want it for that reason. I know some people get them to be prepared but I would rather not stress about something that is not necessarily true. If we have a child with special needs we will learn more then.
    It has nothing to do with whether or not you would abort. That's naive bordering on offensive.
    Actually out of all the people who have a high percentage of having a baby with down syndrome 90% abort the baby. It's a fact, I'm sorry you find it offensive. My sister has a baby with down syndrome so we get to find all the facts, the bad and the good.
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  • I didn't have any of those screening tests. I would never get an abortion so DH and I wouldn't want it for that reason. I know some people get them to be prepared but I would rather not stress about something that is not necessarily true. If we have a child with special needs we will learn more then.

    It has nothing to do with whether or not you would abort. That's naive bordering on offensive.

    Actually out of all the people who have a high percentage of having a baby with down syndrome 90% abort the baby. It's a fact, I'm sorry you find it offensive. My sister has a baby with down syndrome so we get to find all the facts, the bad and the good.


    It's offensive to say you'd never do the tests because you wouldn't have an abortion.

    Tons of women who don't want abortions do those tests, many of them because they want to make sure their baby has proper health care from birth.

    And some women learn that their baby is incompatible with life at the scan, so even if they planned on carrying to term, things change.


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    Ukulady
  • Hubby and I are in are 40s and hubby has a nephew that has Downs.

    We decided to do the NT scan as well as the materni21 test.

    We wanted to know what are chance is. Even if our baby was Downs we would still have the baby.

    We just wanted to know so we could prepare. Baby's with Downs can have heart issues so we would want to make sure Dr know at delivery just in case.

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    RachelCA29
  • I am getting it done, I am not all that concerned and wouldn't ever choose to end the baby's life. My insurance covers it so I am getting it done. I am not really at risk for anything but am doing to find out.

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  • All of you are saying that you would test not because you wouldn't abort but so you would be prepared. I also mentioned in my comment that reason. I didn't say just the abortion I just know that is one reason people find out. It's just if you get a high percentage (which there is a high chance of false positive) you have to get an amniocentesis which is very invasive and can cause a miscarriage, I know it's not a huge number. But I don't want to risk it. My sister and a good friend of mine both had down syndrome babies, both had heart issues, but none of them were offered in utero heart surgery. My niece, her heart fixed itself before they left the hospital, my friends daughter had surgery at 7 months old. My sister didn't know until after my niece was born that she had down syndrome because she didn't get the test either. And I've asked her if looking back she wished she had and she said no. Even if you know that your baby will have down syndrome there are different severities and there is no in utero test that will tell you that.
    I totally get where you are coming from. Makes sense to me!

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    HalseytoBe[Deleted User]
  • All of you are saying that you would test not because you wouldn't abort but so you would be prepared. I also mentioned in my comment that reason. I didn't say just the abortion I just know that is one reason people find out. It's just if you get a high percentage (which there is a high chance of false positive) you have to get an amniocentesis which is very invasive and can cause a miscarriage, I know it's not a huge number. But I don't want to risk it. My sister and a good friend of mine both had down syndrome babies, both had heart issues, but none of them were offered in utero heart surgery. My niece, her heart fixed itself before they left the hospital, my friends daughter had surgery at 7 months old. My sister didn't know until after my niece was born that she had down syndrome because she didn't get the test either. And I've asked her if looking back she wished she had and she said no. Even if you know that your baby will have down syndrome there are different severities and there is no in utero test that will tell you that.
    It's quite obvious you have no idea what you are talking about. Quit while you're ahead.
    I suppose you are the expert?

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    alieflynn1980
  • I get wanting to know to be prepared but no matter how much you prepare every case is different. I just personally feel it's not worth the stress of "what if".
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  • rockopera said:

    The tests are ARE NOT ONLY FOR DOWNS.

    There are fetal abnormalities that are far far worse. Abnormalities that are completely incompatible with life. And there are circumstances where not only fetal health, but maternal health, are very much in danger.

    The argument that "I wouldn't abort a baby with downs so there is no need for testing" is so incomplete and naive it is ridiculous.

    Exactly


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    [Deleted User]tinkerbell019crystaljoanna
  • @redheadbaker it's not stupid or naive to say that you would never abort, because I can say 100% I will never abort my baby. It doesn't matter what is wrong. I was saying no "what ifs" is not knowing until the baby is born how severe the disability is. There is nothing wrong with me not wanting to have those tests because I don't want the stress and it won't make a difference if I want the baby of not. It's my opinion, and that's what the op was asking. My midwife office only offers amnio if the testing comes back abnormal so that would be the only choice for me.
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    alieflynn1980
  • I didn't have any of those screening tests. I would never get an abortion so DH and I wouldn't want it for that reason. I know some people get them to be prepared but I would rather not stress about something that is not necessarily true. If we have a child with special needs we will learn more then.
    It has nothing to do with whether or not you would abort. That's naive bordering on offensive.
    It's the exact same reason we had none of those tests done with our first.  The Doctors told us flat out there was nothing that could be done if we were positive for anything before we had the baby.  While I suppose some people may do it to be prepared, there was zero chance we would have an abortion so we felt it was a complete waste of time and money as well.  If we weren't willing to end the pregnancy if something was positive we saw no reason to do the tests.  I find very little offensive or naive about it; it's just practical for some of us.
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  • Quite simply, no.  We save as much as possible before the baby gets here anyway, if the baby needs surgery he or she will have surgery, and if it would kill me to have said baby I would still have the baby.
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  • We opted out for several reasons. We didn't make that decision lightly though. It was with much discussion and time. We decided not to and happy in our decision


  • We will do as much testing as insurance allows. I am not high risk (AFAIK), but I believe in having as much information as possible. My coworker just had a daughter with cystic fibrosis...I take nothing for granted.
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  • I agree that saying you won't have the tests because you'll never terminate is both offensive and naive. It's not a Downs test. Downs is not as serious as some of the other mutations and abnormalities that are tested with 1st tri screenings. Many are incompatible with life and/or fatal to the mother and the baby. So you have no fvcking clue what you're talking about.

    OP: I had a quad screen and an NT scan with both pregnancies. Both came back with a low risk, thankfully, but to me knowledge is power. Had we had a high risk, we would have pursued a CVS or amnio to get answers and gone from there.
    "Hello, babies. Welcome to Earth. It's hot in the summer and cold in the winter. It's round and wet and crowded. At the outside, babies, you've got about a hundred years here. There's only one rule that I know of, babies. God damn it, you've got to be kind." - Kurt Vonnegut
    Bliss+BerryPrimRoseMama[Deleted User]tinkerbell019EPatter13Luckyu317[Deleted User]
  • I would have given it more thought had my deductible not be as high as it is (my fault...) I'm already dreading what they will charge me at my next visit. I still have time as well to do it. I will talk to my OB when I go in on the 3rd. I trust her opinion.

    27 y/o - Dx with PCOS 7/10/13 - Started on Metformin 8/26/13.

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  • We never did the screening with DS. My OB actually said "if I were one of your closest friends, I would tell you not to get it because it is just added stress". He said this because the screening gives you false probabilities. My cousin had this problem. She was given high numbers from her screening, then was sent for an amnio test a week later. She stressed that entire week over the possibilities, as well as the risk. In the end, her son was negative and was born without any complications. I didn't want the added stress. We would accept what comes as it happens. To each their own on why they do not or do want the testing. It's perfectly personal. We will not do testing this time around either.
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  • My mother is an OB. She and I discussed this right away. She recommended getting the screen simply because should it reveal that the baby has a neural tube defect, then the delivery could be handled with the special care that it may need. We also discussed the worry that the ratios and false positives can bring, but to me knowledge is power and I would rather be prepared.
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    [Deleted User][Deleted User]
  • These screenings/tests have the ability to detect issues far worse than Downs. My first pregnancy, the first tri screening showed NT measurement was thickened, doc recommended we have further testing, as it may have been heart defect, etc. - non-invasive/blood work came back normal. We opted for the CVS, as mom knows best, still had a feeling something was not right. Unfortunately, we were given a diagnosis of Triploidy Syndrome (XXX, 69) a lethal condition - a third set of chromosomes can not be detected by the bloodtests. Lost our angel at 13 w & the pregnancy was determined to be Partial Molar (which is a risk to mom). I am very glad to have gone with instinct and had the further testing. Currently, we are 5 weeks into our next pregnancy and will be opting for screening/testing as we see fit.
    jenniferurs[Deleted User]RachelCA29

  • There's a poster on feb 14 who found out that her baby had an issue incompatible with life at the screening. And that there was a life-threatening complication to HER. So, for those who'd die to deliver your baby... Does that "never ever abort" apply if baby is terminal as well as mom? Or if the condition will end the mom's life before the baby reaches viability? There's zero reason to "die for your baby" if you're going to die before baby can survive outside of your womb, or when baby will never be able to live. Again, it's naive to say you'd never abort.
    Murder is murder, in my book.  If the baby will die on being born then that's how it will happen, not at my own hand.  Be offended if you like, it doesn't really matter to me.
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  • Wow. I have nothing to add except that you need to be prepared so you are at the best medical facility for your baby. My niece has CHARGE syndrome. There were signs of it before her birth but there are no tests currently available to 100% detect it. My sister's docs shrugged off the signs seen in ultrasound and she was induced and delivered at a local hospital. When the baby was born, my niece was immediately transferred to another hospital and a day later transferred to a third hospital where she stayed for 4 months and my sister stayed at the Ronald McDonald house while her other two children stayed with her husband and grandparents so husband could provide for the family. 25 surgeries later, my niece is now 2 years old.

    The chaos involved with the multiple transfers was scary. My sister had to stay in the first hospital knowing her little girl was across town. She would have given anything to have known so at least have been at the best hospital
    for her child's care to begin with. Doctors who are aware of the condition would have been made available and ready as she was induced. While ultimately nothing might have changed, the emotional upheaval of the transfers and coordinating care would have been lessened.

    Do the screening. Then line up the most knowledgeable OB, MFM specialist, pediatrician, and hospital in the event you learn of a specific condition through the screening. That way, the hospital community is ready and your child receives the best possible care.
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    curlylocks3jenniferursAmericanInOz[Deleted User]
  • I just got the quad blood screening done on monday ...Super nervous waiting for results next monday. But at out a/s Tuesday she looked fantastic so praying God stays on our side.

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    [Deleted User]


  • There's a poster on feb 14 who found out that her baby had an issue incompatible with life at the screening. And that there was a life-threatening complication to HER. So, for those who'd die to deliver your baby... Does that "never ever abort" apply if baby is terminal as well as mom? Or if the condition will end the mom's life before the baby reaches viability? There's zero reason to "die for your baby" if you're going to die before baby can survive outside of your womb, or when baby will never be able to live. Again, it's naive to say you'd never abort.
    Murder is murder, in my book.  If the baby will die on being born then that's how it will happen, not at my own hand.  Be offended if you like, it doesn't really matter to me.
    Hmmm, have my baby suffer and die from a life threatening disease or birth defect for what would be a short miserable life<spare my baby the pain and suffering.

    I think it is way more selfish and WRONG to birth a child knowing they are going to die and SUFFER from it than it is too spare yourself and your baby the grief.

    It's a BOY










    jenniferursJazzra369gutsymama
  • We opted for the testing. I am adopted. It's like playing Russian procreation roulette. You never know what genes you're gonna get!

  • There's a poster on feb 14 who found out that her baby had an issue incompatible with life at the screening. And that there was a life-threatening complication to HER. So, for those who'd die to deliver your baby... Does that "never ever abort" apply if baby is terminal as well as mom? Or if the condition will end the mom's life before the baby reaches viability? There's zero reason to "die for your baby" if you're going to die before baby can survive outside of your womb, or when baby will never be able to live. Again, it's naive to say you'd never abort.
    Murder is murder, in my book.  If the baby will die on being born then that's how it will happen, not at my own hand.  Be offended if you like, it doesn't really matter to me.
    Are you serious? Because holy shit if you are. How dare you.
    "Hello, babies. Welcome to Earth. It's hot in the summer and cold in the winter. It's round and wet and crowded. At the outside, babies, you've got about a hundred years here. There's only one rule that I know of, babies. God damn it, you've got to be kind." - Kurt Vonnegut
    jenniferurs[Deleted User]PrimRoseMamaJazzra369
  • melsmity143melsmity143 member
    First Anniversary First Comment
    edited December 2013
    If my insurance offers it, absolutely! 

    Even if I found out my baby had a higher chance of having down syndrome, at least I can prepare myself and research resources to ensure my baby has the best chances at living a normal, fun, and wonderful life.  I don't find it stressful - I find it challenging and new. Every child is a blessing and deserves a prepared momma and daddyo!
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  • escortDEWescortDEW member
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    edited January 2014
    BTW, my situation was a little different than Downs' Syndrome in that my baby was anticipated to not live more than a few hours & we knew he would have little to no lung tissue at birth. If he did live it would be less than a year &  he would have required multiple surgeries & have significant disabilities.

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  • I have a son with a chromosmal duplication, severe Classic Autism and Global Developmental Delay.  I would never consider aborting a child because of a disability.  That being said knowledge is power.  Especially if there are physical risks the baby faces.  For that reason I will be getting testing done.

  • All of you are saying that you would test not because you wouldn't abort but so you would be prepared. I also mentioned in my comment that reason. I didn't say just the abortion I just know that is one reason people find out. It's just if you get a high percentage (which there is a high chance of false positive) you have to get an amniocentesis which is very invasive and can cause a miscarriage, I know it's not a huge number. But I don't want to risk it. My sister and a good friend of mine both had down syndrome babies, both had heart issues, but none of them were offered in utero heart surgery. My niece, her heart fixed itself before they left the hospital, my friends daughter had surgery at 7 months old. My sister didn't know until after my niece was born that she had down syndrome because she didn't get the test either. And I've asked her if looking back she wished she had and she said no. Even if you know that your baby will have down syndrome there are different severities and there is no in utero test that will tell you that.
    It's quite obvious you have no idea what you are talking about. Quit while you're ahead.
    I suppose you are the expert?

    For one thing, you wouldn't get an amnio. You'd get a chorionic villus sampling (CVS) test. Amnio is for later in the pregnancy. It would be an option if something shows up during your anatomy scan (most often performed at 18 to 22 weeks). 

    And anyway, as someone else pointed out upthread, there are newer, less invasive blood work options (like MaterniT21, Harmony, and Panorama) tests that give you a definitive answer. So, you're not left with "what ifs." 

    I don't care one way or the other whether you get the test yourself or your reasons. If you think you'd never abort, I think you're naive. But that doesn't affect me at all. 

    But when you start spreading misinformation on this site, you're going to get called out on it. 
    I wouldn't get a CVS, in fact they don't even do them in the state I live.  There has been documented cases where they have found cells in the placenta for downs as well as other defects and the baby didn't have it, plus miscarriage rates are higher.  I would wait for the Amino in that case.... Although I chose NT scan and the Chrom test and will go from there.
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  • I'm talking about anyone else, I'm talking about my own personal beliefs.  Not sure where my religion, and what you assume it to be, comes into play.  For ME to have an abortion, I would consider MYSELF to be committing murder.  I didn't say you have to feel that way, I said I do.  It's your choice and one you have to live with.  It is not one I could live with.  They asked what I thought and said that to say I would never have an abortion is naive; I disagree.  End of story.

    @vikingmom806, I find it really cute that you accuse me of lacking in compassion, and blah, blah, blah...  How about you remove the plank from your own eye before going for the splinter in mine?  You do not know me, you made a bunch of assumptions on who and what you think I am and that I apply my own beliefs to everyone else I meet.  I could tell you that you're wrong, but I don't think it would do me any good, you seem pretty determined to judge me by your standards when the Bible specifically tells you to leave that to God.
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  • You're real peachy yourself, WhoCanItBeNow.  I don't know why you feel the need to get so worked up about someone else's feelings and choices, but I guess that's your prerogative.  I'm not trying to force my beliefs on you, so why do you even care what I think or do with my own body?
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  • Let me make this really clear, because people are apparently missing the whole point, I WAS NOT TALKING ABOUT YOU!  When I answered the question posed to me, I was answering it for myself, and only for myself.  I am not speaking of anyone else's choices or decisions, I don't know, care, or judge you for your choices, I was speaking of my own.  For ME, ending a baby's life is not a choice I think I could live with, that doesn't mean I find fault with someone else who has made it.  You all assumed I was talking about you, you made my comments about yourselves, and they were never meant to be.  You assumed it's because I was trying to force my religious beliefs on you and would denounce you all as murderers if you consider aborting a baby who wouldn't live anyway.  I never said that, and it is not the case.  Let me explain to you where I'm coming from.

    When I was a teenager I was raped.  I made the decision then that abortion was not an option.  I was then abused, both mentally and physically, but someone who claimed to be doing me a favor by "caring" about me.  It took me two years to get out and up until that point I still had not told anyone I'd been raped.  I took it out on myself, blamed and hated me, for what someone else had done.  I spent far too long thinking my life was worth nothing and I am still, almost 10 years later, finding pieces of me that have not totally healed.  I am not telling you ANY of this for sympathy.  I simply want you to understand.  I have come a long way, and a whole lot of that is because of the love, and lack of judgement, my husband has shown me.  The result is that I, feeling that I have regained my life, could not take another's, even in place of it.  I am not trying to push or force my choices or my decisions on any of you, I would never do that.  All I said in my first few posts pertained to myself alone.  I don't know why earlier posters made it about themselves, but it was not meant to apply to them. 

    When I replied last night, it was with frustration and I had not yet read the first few replies to my original comments.  I didn't realize you all thought that I was talking about anyone but myself!  Just to make this clear, my comments were only about my personal choices, they were not an attempt to tell any one of you who has read this what choices you should be making.  You made that assumption, and I'm still not certain why, but it is incorrect. 

    I did see one person who said that they were forced to make that exact decision, and to her I just want to apologize for the misconception.  I did NOT intend or mean for my comments to make your pain worse, even for a moment.  I am really and truly sorry if they did.  If someone I cared for were in that position, I would probably encourage them to make the choice you did.

    I hope that this clears some things up, as this thread has become little more than a name-calling session.  My opinions are my own, and they are only meant for the one person whose choices I can affect; my own.  I didn't mean them as guide for others or a comment on someone else's choices, none of that was ever my intent.  Take care, ladies.  I do hope things go easy and well for all of you.
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  • Lgrant0714Lgrant0714 member
    10 Comments 5 Love Its
    edited January 2014
    Good luck to everyone...regardless of the path you choose for you and your baby.
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  •  I chose to have the NT test because as a series of diagnostic tests it is fairly reliable but it still only gives me a percentage of the likelihood of Down's. I would not have an amino or an abortion. But I would like as much information to prepare for my child as possible and also to hasver services and support in place if needed.
    [Deleted User]blacktie3
  • Well, to answer the actual question that was asked: YES, I opted for genetic testing.  I think knowledge is a good thing, and I'd be far more stressed out worrying if something was genetically wrong for months and blindly hoping for the best, than worrying for 2 weeks until the results came back, but getting a concrete answer. 

    I got the CVS test, because it was earliest definitive test, and because I'm 38, and this is my first. 

    If you go to an experienced provider, the risk of miscarriage is the same for CVS as for amnio, and in my age bracket, the risk of a chromosomal abnormality is higher than the risk of miscarriage from one of those tests, so the decision was easy.  Plus, my age makes me "high-risk", so insurance covered it, no problem.  They also offered the blood test to see if I was a carrier for cystic fibrosis, so I got that done, too. 

    A note on the CVS test itself, since I haven't seen much discussion of the actual procedure: I had to have the sample taken via needle, and it really wasn't that bad.  No spotting, no leakage, and it seemed a bit more direct getting it done via the needle, because they could go straight to it, instead going up and in and over.  I also figured I'm going to go through a LOT more pain eventually than about 60 seconds minor discomfort now, so I just gritted my teeth and got through it.

    Happily, I have almost zero chance to be a carrier for cystic fibrosis, and baby's got 46 verified chromosomes - no extra, no missing.  Now my only concern about genetics is hoping baby gets my good eyesight and DH's fast metabolism!  I'm glad I had it done. 
  • I just had a long discussion with my OB today and I'm opting for the Maternit21 blood test which is 99% accurate for chromo abnormalities. I'm also 35 and have a cousin with Downs. Nothing is covered under my insurance for genetic screening. The Ultrascreen is only 95% accurate. While I was in the room waiting for my OB I actually heard the nurse giving borderline test results for the ultrasound Ultrascreen and they recommended the Maternit21 test to confirm. Knowledge is power. With my two given risk factors, we chose wisely for our family, now I'm just hoping for good results.
  • For those who opted for the test, but were not covered by insurance, how much did it end up costing you out of pocket?

    Thanks in advance!
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  • Private pay was quoted by the company who does the blood test at 990.00. Yikes.
  • kateitho said:
        We will have the test.  With my history of losses and my history of Marfan Syndrome, it seems stupid not to have as much information as possible.  Marfan syndrome can cause congenital heart defects, and I would opt for a cesarean at the Children's hospital 4 hours away versus laboring in town and potentially losing my baby after birth.  I feel like no mother would knowingly put off preventative measures to keep her child healthy and safe after birth, so why would I put them off before birth?
    THE MORE YOU KNOW
     

    You are a pip, ain't ya?

    We opted not to have the screening done for our daughter. We will not have a screening done for this child either. It is a decision each parents makes based on the information they have at their disposal. To decide that people that choose not to get the screening are stupid, is incredibly ignorant.

    Also, the 12 week screening is not diagnostic. It cannot tell you if your child has a disorder. It gives you a risk percentage.

    As for the horribly misguided poster that believes that all terminations are murder, stop giving her attention. That is what she wants.


     

     

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  • @nicbrooke, who the fuck are you and why are you flagging me.
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