Tuesday, August 9, 2011

Nuchal Screening Results...

...and a very long winded description of yet another appointment with yet another dr who is not my OB...

The results are in:
1:6000ish for Trisomy 21
1:1200ish for Trisomy 18

Nuchal fold 1.5mm
Beta-HCG 1.56 MoM
PAPP-A 1.04 MoM

I went in for my appointment believing that I would see the OB I was booked in to see - how naive of me! I was actually rather mean to the very nice resident who had to deal with me for the first part of the appointment - she kept asking why I felt that I had to see Dr P, and went a little quieter when I said quite bluntly that he was the only one I trusted after all the other Drs at this hospital treated me like an idiot when I thought there was something wrong with my Starbaby, right up until he died. Then of course they were all very very sorry for the tragic "incident" as the resident called it.

She asked whether I had done the Nuchal yet. I stared her down and said "yes, that would be why I am here". So she looked them up on her computer and says "Oh yes it looks like everything's good".

And looks at me. I stared at her "yes well I will need the actual results please. Print me a copy". She looks at me again "Is there something worrying you?"

Are you FUCKING SERIOUS?

Yes dear, there is something worrying me. The fact that I might have another terminally ill baby. The fact that I was told on the Nuchal with my full Trisomy 18 baby that the odds of him having Trisomy 18 were "very low". Had I known what to look for back then, he was classic T18. Had ANY Dr bothered to double check the results, they would have seen that he was classic T18.

For the record, for anyone who is interested:
  • A recent retrospective study revealed reduced levels of pregnancy-associated plasma protein A (PAPP-A) and free beta–human chorionic gonadotropin (beta-hCG) at 8-13 weeks' gestation
  • The multiples of the mean (MoM) in affected pregnancies was 0.25 for PAPP-A and 0.34 for free beta-hCG.
  • Screening for trisomy 18 using a combination of maternal age, PAPP-A, and beta-hCG has a detection rate of 76.6% with a false-positive rate of 0.5%.
Interestingly, our readings with our Star who died from full T18 were PAPP-A of 0.27 and 0.33 free beta hcg. Which is pretty much spot on with their average in affected T18 pregnancies. I think it was the fact the nuchal reading was good that threw it off - I think if they took that out then the biochemical reading alone would have told them it was T18.


As the appointment wore on and I let my guard down a little, she was very nice and didn't mind all my questions, where a lot of other doctors sort of roll their eyes at me now or brush me off. I informed her of the above information and taught her how to interpret the results "Don't ever rely on their little summary at the bottom of the page that just says "low risk" or "high risk".

I was starting to feel ok about not seeing Dr P but then I heard his voice in the hallway outside the room and she rushed out to get him. I'm assuming it went something like this "There is this very pushy crazy lady in there DEMANDING to see you. Help me? Help me help me"

He came in and looked at me "Ohh yes I remember you very well. You have more names than you used to" (true I did hyphenate it with Lou's when Manny was born). He turns to the resident and proceeds to tell her about my "complicated case" and basically rehash everything I have said, verbatim, which pleased me because it showed her that I wasn't being a drama queen, the Drs I saw in the past really were incompetent, and my case really is that dramatic.

He turns to me and starts telling me how I won't be able to see him at every appointment, and that sometimes I will see a resident or another Dr, so that "everyone can learn".

It was at this point that I realised I have become the teaching case.

"What not to do with your patients."

Now most of the time, I have no issue educating people. Especially people who think they know more than me*, but honestly? It is damn tiring having to constantly rehash my entire history. Go through in detail how my son died and why the Drs should have seen it. To talk about how I was humiliated by the OB I saw at 36 weeks, days before he died, and then was born. To hear them refer to him as a "tragic incident" a "terrible thing that happened" a "sad time". To have to go through all of that, every time I have an appointment with this pregnancy, is just fucking inconsiderate.

And I think I shan't do it any more.


*(most doctors I have encountered have fit this description when it comes to my actual situation, I'm sure they have more general medical knowlege than me!!)



5 comments:

  1. Ugh, I'm sorry you have to deal with this! Hopefully they can actually learn something from it. Hugs!

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  2. I'm sure we must go to the same hospital! This sort of thing happened to me too many times to count with my subsequent pregnancy after loss. It is infuriating and completely frustrating. Being treated like a number is how my daughter died in the first place and I expected much better the next time around. For the most part though, it was much better. But I certainly had to stamp my feet.
    Sending you love.
    xo

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  3. Glad your results are good, but am horrified at the stupid medical staff. Just insane.

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  4. 1st, yay for the good results! News to celebrate! I can't believe you had to go through that with the doc - no, you shouldn't have to do this with every appointment.

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  5. Such good news! Sorry about the idiot medical staff.

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