Toddlers: 12 - 24 Months

What should I do? F/U to last U/S

I went for a second opinion U/S yesterday.  Last week one place told me that our baby was missing 3 fingers on her let hand.  They saw a thumb and index finger, but the other 3 never developed.  Yesterday, a different place told me that her palm is very small (about 1/2 the size of her right), she has a thumb and 4 partial fingers or nubs.  The results were very different....so I'm confused and frustrated.

None of the doctors seem to think this is a chromosomal problem, that is was an isolated incident.   However, my OB said that my chances of the baby being born with Down Syndrome went up to 1 in 750 (based on my blood work), which is still within normal limits.  He said I might want to consider doing an amnio to rule it out.  What would you do?  There are risks to the amnio, and I don't think I want to do it.  WDYT?

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Re: What should I do? F/U to last U/S

  • Ask yourself this question, Would I feel any different about the outcomes of this pregnancy if the tests were positive?  If not, then are the risks of the amnio worth it?

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  • Oh my word, I am so sorry. There must be so many thoughts going through your head! Could you write down everything you are feeling on paper & then try to go from there?

    Good luck to you. Please keep us updated.

  • Hi - first, hugs for you! I'm very sorry you're going through this. It is so tough. We went through something similar - both DH and I are CF carriers, as we found out after I got pregnant, so we went through hell, did a CVS (it's like an amnio, but they can do it earlier in the pregnancy), and thank G-d, DS was born healthy. So, bottom line, I kind of know what you're going through.

    Why do you want to do an amnio? As in, what will you do with the results? A lot of people simply want extra time to prepare for whatever it is that they find out, others want the info to make a decision about the pregnancy overall. I never could answer this question for myself, but I struggled with it until we got the call with good news. So, if you think that you need to know - for whatever reason - then go ahead and do it. The risks are there, but they are very low, and if you'll be worried to death because you won't know, then that is not good for the baby either.

     I'll keep you and your family in my thoughts!

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  • I'm so sorry you are going through this. When my friend had her u/s they told her that the baby didn't have a nasal bone and that she could possibly have downs. She went ahead and did the amnio and everything turned out fine. I would suggest doing it if you need to know for sure so you can prepare yourself, but if the outcome doesn't matter either way, the risks would not be worth it. Good luck, I hope everything turns out fine.
  • imagejbyoung:

    Ask yourself this question, Would I feel any different about the outcomes of this pregnancy if the tests were positive?  If not, then are the risks of the amnio worth it?

    I agree.  When I was faced with making some tough decisions with my first pregnancy my H and I decided that it didn't matter what the outcome of the tests were - we wouldn't change our minds about the pregnancy.  I had the amnio because we needed to arrange for surgeons upon the birth of our baby but sadly, 10 days later we found out he died.  With the pregnancy with our daughter we decided that no test was going to give us info that would change our minds about the baby so we didn't do any invasive testing.  We had a lot more ultrasounds and just put our faith in God.  Our daughter is about to turn 1 - she's perfectly healthy.  I still think about my son every single day and miss him like crazy but there isn't anything the doctor could have told me via test results that would have changed my mind about having him or not.  Those are decisions that each individual needs to make.  I have several friends (from our support group) who made different choices and that was what worked for their family.  I will keep you in my thoughts and prayers that you will be able to make some clear decisions and have peace in your heart. 

  • Well, it depends.  Would you do anything differently if the amnio results revealed DS or other medical complications?  Or are there things the Dr. would need to do while the baby is in utero (e.g. specific meds)?

     

    FWIW, my DS was born with what we call a "tiny toe."  The middle toe on one of his feet is smaller than normal.  He doesn't have a toenail on that that toe either.  It wasn't noticeable on the u/s and it was a fluke.  The Dr. said it was probably a pinched nerve during development, not a birth defect.  I also briefly dated a guy in college that had a deformed (I don't know if that's the right word) hand - he only had a palm, thumb, and one finger.  He played on the football team and it never seemed to hinder him.   

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  • imageazaretsky:

    Hi - first, hugs for you! I'm very sorry you're going through this. It is so tough. We went through something similar - both DH and I are CF carriers, as we found out after I got pregnant, so we went through hell, did a CVS (it's like an amnio, but they can do it earlier in the pregnancy), and thank G-d, DS was born healthy. So, bottom line, I kind of know what you're going through.

    Why do you want to do an amnio? As in, what will you do with the results? A lot of people simply want extra time to prepare for whatever it is that they find out, others want the info to make a decision about the pregnancy overall. I never could answer this question for myself, but I struggled with it until we got the call with good news. So, if you think that you need to know - for whatever reason - then go ahead and do it. The risks are there, but they are very low, and if you'll be worried to death because you won't know, then that is not good for the baby either.

     I'll keep you and your family in my thoughts!

    I so agree wiht the highlighted...your in my thoughts and prayers...whatever your decision is know that you are loved...GL

     

  • Can you get a third opinion on the u/s?

    I was given the option of the amnio do to being high risk for downs. My specialist told me that if I wasn't going to abort if the baby had downs then there was no need b/c there is a risk of m/c by doing an amnio. I chose not to cause I would not have aborted my baby had she tested positive for downs.

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  • I'm sorry you're going through all of this.  I can't even imagine :(

    I'm going to tell you what *I* would do, but that's not necessarily what would be best for you, ya know?

    1 in 750 is still so, so, so small.  Since having the test done would not effect what I would do, I wouldn't personally have it done.

    (((((hugs))))) and good luck to you.  My thoughts are with you.

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  • After the 1st u/s, we decided not to do the amnio.  My OB said today that if the baby did have DS and a hand difference, it might change things for us as far as termination.  I am sick just writing that.  Dh is in Europe until Sun and I'm dealing with this alone.  I just want her to be ok.  My gut says not to do it.  I don't think I could ever terminate the pregnancy, so in the end it would just be for my peace of mind and to be more prepared if there were other problems.  Thanks for the advice ladies.
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  • To put it bluntly if you would not terminate either way I wouldn't risk it isince those test are just estimates any way and she could come out completely DS free even with closer odds but that's just me.

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  • You're asking what I would do- I'd do the amnio.  The risks are very, very low, and the benefits are high- you'd know exactly what was up.  And personally, if I learned I was carrying a child with Down syndrome at under 20 weeks, I would very carefully consider my options- I've had one special needs child (who was "fixed" for the most part) and I have no desire to have another, cold as that might sound.
  • imagewhitehead15:
    After the 1st u/s, we decided not to do the amnio.  My OB said today that if the baby did have DS and a hand difference, it might change things for us as far as termination.  I am sick just writing that.  Dh is in Europe until Sun and I'm dealing with this alone.  I just want her to be ok.  My gut says not to do it.  I don't think I could ever terminate the pregnancy, so in the end it would just be for my peace of mind and to be more prepared if there were other problems.  Thanks for the advice ladies.

    Try to remain prayerful and stick to what you truly feel is right for her and your family. I pray that she is just fine come her birthday. 

     

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  • I would have the amnio just for piece of mind and preparation purposes.  I would never terminate, but I would want to know, need to know- I am a planner.  Just like I need to know the sex.  I know you can't be 100% sure, but it might help relieve some of the what-if's.  GL in your decision.  Do whatever you feel will give you and your DH the most peace.
  • imagejbyoung:

    Ask yourself this question, Would I feel any different about the outcomes of this pregnancy if the tests were positive?  If not, then are the risks of the amnio worth it?

    My thoughts exactly.

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