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Prenatal Testing

Last post 08-11-2009 5:40 PM by jacksmommy. 4 replies.
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  • 08-06-2009 10:29 PM

    • CamsMommy
    • Top 500 Contributor
    • Joined on 08-04-2008
    • Oak Creek, WI
    • Posts 44
    • Points 1,170

    Prenatal Testing

    It's been a while since I've been out here.  My son Cameron is now almost 15 months old - WOW!  I read through the new parent posts and it really takes me back...

     Anyway, just wanted some other points of view on a dilemma I am having.  I had genetic testing done on Cameron and we found he has OCA2.  I am now pregnant with our second child and debating whether to have this child tested prenatally. 

     On one hand, there is nothing I would change if I found this new baby had albinism.  I certainly would NOT have an abortion.  But, here is my struggle...if I do not know either way beforehand, how will I feel on delivery my first action going to be checking this baby's eyes?  Or looking at his/her hair?  I don't want to be waiting for the PO to come to the hospital.  I guess I just feel like I want to be prepared one way or the other.  I don't want my family looking at the baby and making guesses.  There is a very small chance of miscarriage if I do an amnio...very small.  1 in a 1,000.



    • Post Points: 65
  • 08-07-2009 1:15 PM In reply to

    Re: Prenatal Testing

    if it was me I would want to know, but if there was a chance of miscarriage just for me to find out, i would not go through with it. It is very exciting that Cam is going to have a lil brother or sister!  I hope the baby does not have albinism, but at least if he or she does, you know what u r dealing with. Good luck with your decision....


    • Post Points: 5
  • 08-07-2009 6:54 PM In reply to

    Re: Prenatal Testing

    Nice to see you posting again. I would ask myself 1. What am I prepared to do if it is  positive and 2. Is it worth the risk of miscarrying?

    My Bryn has 2 chromo disorders. We were told they would test for it but asked me the above questions. Now we would do testing b/c I need to know ahead of time to have a certian team in place due to fatal complications.

    But with OCA2 there are no fatal consequences in waiting until the baby is born. Knowing wont change anything really and you run the risk of losing your baby.

    But that is just my opinion really.

    • Post Points: 5
  • 08-09-2009 8:06 AM In reply to

    Re: Prenatal Testing

    Hi Courtney.  It is hard to believe Cam is almost 15 months old!  I am pegnant with baby #2 right now, and know how you feel.  I never had Zach tested to find out what type of albinism he has, so even if I wanted to, I couldn't do amnio and have genetic testing done to see if this baby has it too.  We did go through a period, though, of thinking the baby could possibly have Down's, and I ultimately chose not to have an amnio to confirm one way or the other because of the risk of miscarriage (having already been through one previously).  I just couldn't handle it if I managed to be the 1 in 1000 that had complications.  I know it seems like a long time to wait, but there aren't any immediate health complications to albinism, so I wouldn't take the risk, personally.  Baby #2 has a different father than Zach, so the chances of him having albinism are small, but I already told my husband that if he comes out with white hair I'm probably going to fall off the operating table!

    • Post Points: 5
  • 08-11-2009 5:40 PM In reply to

    • jacksmommy
    • Top 200 Contributor
    • Joined on 06-30-2009
    • Kansas
    • Posts 51
    • Points 1,030

    Re: Prenatal Testing

    If it will put your mind at ease, it may be worthwhile to do the amnio.  Keep in mind that they may find other things on the amnio, too...I've had several friends who were told they would likely have a Down's Syndrome baby or that their babies had other disorders, and then when the babies were born they were perfectly healthy.  This caused them a lot of needless stress and worry, which is the main reason I did not have an amnio with Jack.  If we don't have an amnio, we will probably try to see if a PO can be brought in right after the baby is born to make a diagnosis.  I can't imagine waiting any longer than that to find out!

    I look back on Jack's first couple of months and wish I had known about his albinism...I could have dimmed the lights more and would have been more sensitive to his squinting.  If we don't find out prenatally with our next child, I think I will have the lights dimmed in the delivery room and in the hospital room until a PO tells us for sure. 

    I know what you mean about family members making guesses, making comments, etc.  I dread that...but I also think that people will be comparing your children in many ways, so that's just one more comparison they will make.  Just think about how when a baby is born, everyone looks to see if it looks more like mom or dad...if it looks like its siblings...etc.  So even if they know the child doesn't have albinism, there will be other comparisons to make!

    Having recently been talking about this same issue with my husband, I thought I would share the things we've been considering.  But in the end, it's a very personal decision, and I don't think there's a right or wrong answer.

    Good luck to you!

    Amy, mommy to Baby Jack

    • Post Points: 5
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