Special Needs

FTM: fear of the unknown

I'm 18 weeks pregnant with what will be my only child.  I was told it would be near impossible for me to naturally conceive based on my health conditions, but I did after several years.  I am over 35, have diabetes and PCOS.  I had Maternit21 done early and received the negative results at 11 weeks.  At my NT at 12 weeks, I was told everything looked great.  Because of the M21 test they didn't give me ratios.  I went to the mfm at 18 weeks for my level 2 anatomy scan.  At first they didn't have my M21 results and the dr seemed to not believe me when I told them they were negative.  He explained the femur, humorous, neck, heart, etc. everything was where it should be.  But he then showed me her profile and said they couldn't locate a nasal bone.  He explained this as a soft marker for ds and went into options of amnio to find out for sure.  He started telling my husband and I about Florida abortion laws.  We both without even looking at ech other shock our heads no and I said that is not an option.  Then the nurse handed him the M21 test results and his demeanor changed.  He said its a soft marker, but your results are negative.  He then pointed out on one scan what could possibly be a short nasal bone.

 

i am so confused now.  I feel like he was trying to scare us into an amnio and when I said no and he saw my M21 results he just backed off and told me to come in four weeks later for an ECG.  Which was already part of my protocol for the diabetes.

even if my daughter has ds, I will love her just the same.  I'm terrified of how I will handle her disease and scared of all the unknown.  But I also know whatever happens this was God's plan.

thanks for letting me post here and sorry for the long post.  I'm just confused, scared and worried. I truly think she is fine, but then doubt pops in and scares me again. 

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Re: FTM: fear of the unknown

  • imageCherryHolly:

    I'm 18 weeks pregnant with what will be my only child.  I was told it would be near impossible for me to naturally conceive based on my health conditions, but I did after several years.  I am over 35, have diabetes and PCOS.  I had Maternit21 done early and received the negative results at 11 weeks.  At my NT at 12 weeks, I was told everything looked great.  Because of the M21 test they didn't give me ratios.  I went to the mfm at 18 weeks for my level 2 anatomy scan.  At first they didn't have my M21 results and the dr seemed to not believe me when I told them they were negative.  He explained the femur, humorous, neck, heart, etc. everything was where it should be.  But he then showed me her profile and said they couldn't locate a nasal bone.  He explained this as a soft marker for ds and went into options of amnio to find out for sure.  He started telling my husband and I about Florida abortion laws.  We both without even looking at ech other shock our heads no and I said that is not an option.  Then the nurse handed him the M21 test results and his demeanor changed.  He said its a soft marker, but your results are negative.  He then pointed out on one scan what could possibly be a short nasal bone.

     

    i am so confused now.  I feel like he was trying to scare us into an amnio and when I said no and he saw my M21 results he just backed off and told me to come in four weeks later for an ECG.  Which was already part of my protocol for the diabetes.

    even if my daughter has ds, I will love her just the same.  I'm terrified of how I will handle her disease and scared of all the unknown.  But I also know whatever happens this was God's plan.

    thanks for letting me post here and sorry for the long post.  I'm just confused, scared and worried. I truly think she is fine, but then doubt pops in and scares me again. 

     

    Hugs to you.  The not knowing can be harder than anything sometimes.  It's okay to be scared.  And you are right, you will love that sweet girl so much no matter what!

     My daughter doesn't have ds, but we deal with some of the same kinds of things as kiddos who do.   I promise you will be fine in dealing with treatments, etc.  It won't always be easy but before long you will learn the ins and outs of it all and will be a pro.  People always tell me the first year is the hardest with babies like mine.  She is almost 11 months now and they were right--life is much easier now than it was in the beginning.

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  • there are unknowns no matter what type of child you have.  But as a parent you learn and you grow with time and you just do it because you have to.  And sometimes it is too much to handle and we all have our emotional breakdowns. But they only make us stronger because we're advocating for our babies.

     

    My boys don't have Ds, but they do have a genetic disorder.  There were random soft markers, DS1 had an echogenic focus in his heart at 36w but not at 20w.  And DS2 had a Single Umbilical Artery.  The only thing our doctor pushed us towards was an amnio with DS1 which we declined because i was already 37w pregnant and he could be born prior to receiving the results.  And with DS2 they never mentioned termination or genetic testing.  

     

    I'm not going to lie, I still have my days.  I still have my moments.  But my boys are beautiful and happy and make everyday worth the journey. 

    To my boys:  I will love you for you Not for what you have done or what you will become I will love you for you I will give you the love The love that you never knew
  • Fear of the unknown is the worst. My son doesn't have DS, but I can understand your fears. It's a scary thought thinking something might be not typically developing in your baby. Of course you will love her just the same. You will have your moments as we all do. Remember 18 weeks is still early. I am an OB nurse and have had patients who were told that their babies could possibly have DS and they didn't and vice versa. It is a soft marker only and that's it. You of course can't tell for sure until baby arrives, without an amnio, but they will closely monitor you and if your next scan shows anything a little abnormal, ask to be referred to a perinatologist, high risk OB doc.
  • My son has Down Syndrome. They never suspected anything until he was born. You can do it! Big hugs.

    He is so bright and amazing. If she does have DS, you'll be extra prepared if you find it is true. We've adjusted well even just found out at birth. It'd a lot to absorb!

    imageVincent Julian born on March 27th, 2013 DX with Down Syndrome image
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