Monday, November 5, 2012

An Update

I got the amnio results on Friday.

Its somewhat good news in that of the cells they tested all were normal.

The reason I am not jumping for joy is because they tested 17 cells in 15 cell colonies. That is the standard for amnio, 15-20 colonies, but I was hoping that given my ambiguous findings of the CVS they culture more than normal to rule out mosaicism.

When the GC called me she said she had great news and the result was normal.  I was less focused on the "normal" than the cell count since that is what I had my hopes pinned on. Right before the amnio she had mentioned they test 15 colonies and I had mentioned my concerns with that number and requested she ask for an extended study.

The GC confirmed that the report says that it exhausted the sample so maybe there was nothing more to grow. I have learnt in my research that not all cells in an amnio are actually "culturable". I requested to speak with the Dr and see if I can do another amnio.

Maybe I am being paranoid but the prognosis for this syndrome is so heartbreaking that I need to be very comfortable that it is not something my baby will have to deal with.

The Dr called me and he felt that repeating the amnio will not yield anything more. He said its the same type of cells (urine/skin) and so it would not show anything different.  I beg to differ, yes it same type of cells but its like looking for a potential worm in an basket of apples. If you look at 15 or 40 apples, you have a better chance of finding the worm in 40 than in 15.  That is my logic.

Anyway, he seemed optimistic with this result and is going to use the next U/S ( anatomy scan) to make a full determination.

That is 3 weeks away!!!!

I called some other perinatal clinics to see if I can get in to do a second amnio (self pay). But they need a referral.  I then placed a call to my OB office. 

By end of day the mid-wife called me back. She is the manager whom I had met last time and I found her very knowledgeable and supportive.

She was really shocked to know what had been going on and her first words were "why did you not call me?" I now realize that the mid-wife plays the role of your cheerleader, confidante, and support system and I should use her as my support.

Of course I burst into tears and sobbed my way through the whole sordid story. I told her that I am not feeling comfortable with the small sample analyzed. She immediately understood that my being reassured was important to both my health and the baby's, so she said that she will try and get me to see another perinatologist at another clinic for a second opinion.

I hope I hear back today but I know it will be a tough sell. 
So, while this is somewhat reassuring news and certainly in the right direction, we are not out of the woods by any means.

I had hoped that I could have let all this go when I got my results, but I am still in the same place and still worried out of my mind.

9 comments:

  1. Glad things seem to coming out positive (or rather negative I guess), but I hope that you are able to get the reassurance that you need.

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  2. I'm glad that things are looking positive so far, but I completely understand your need for more reassurance. Thank goodness you have your midwife to champion your cause for you. I hope you hear something soon.

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  3. I'm so happy to hear this news! Can you find any statistics or get from doctor how many cases occur when the amnio has come out negative like this? Sending much support and hopes you will receive further reassurance.

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  4. I really feel for you and I understand how upsetting and frustrating this is for you. ( I am the x NICU nurse that posted before). I believe your in the Atlanta area? Is it possible for you to see a perinatologist at Emory - the have a wonderful program and a teaching hospital is much better for looking for a needle in a hay stack so to speak.

    I think your in great shape with a " normal" amino but I am certain the right specialist can make you feel much better and help you stay positive during your pregnancy .

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  5. I don't know enough about this but I just want to say hang in there. The midwife sounds like she's in your corner. I'll bet you'll have a referral for a second opinion tomorrow. Can your GP or possibly the RE do the referral?

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  6. I'm so glad that the results were positive but I wish you were more at peace with everything. I hope your midwife is able to help and get you a second opinion. I wish you weren't going through this.

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  7. I am so sorry to hear what you are going through. I hope you find some peace of mind soon - just remember, getting a normal result on your amino really is great news! There is no way to be 100% sure no matter what, but you just lowered your odds off having any issue drastically. Hang in there, this is scary stuff, I know...

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  8. So far the news is good, but I totally understand your concerns and worry. Your midwife sounds wonderful - I hope she's able to give you a second opinion that is able to set your mind and heart at ease.

    In the end I hope that the only bad thing about this ends up being that you lost precious weeks of being happy while pregnant. xoxoxo

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  9. I'm glad that your amnio results didn't come back abnormal because it means your baby still has a chance of being normal and healthy, but I completely understand why you want further reassurances and proof. I think it's great that your midwife has your back and I hope that she can help you get more testing done.

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