First of all, I hadn't been in CHEO in a while. It's such a...human...building. You walk in and the mixture of happiness and hope and the sadness and worry that fills the air is pretty crazy.
As promised, here are the answers given to us:
- How frequent are the cases of negative positives or positive negatives for the amnio diagnostic test?
None that she was aware of. The only thing that could happen is that the sample taken will fail to produce enough cells to produce a proper result. In this case, they would know and advise us.
- What factors come into play into being identified as positive in the IPS? (weight on form, precision of due date, do levels in blood change daily, does sex of baby come into play)
The weight and dates do have an impact. However, my dates were entered correctly. She confirmed levels change on a day to day basis but normally the blood taken is a good indication of what is going. In my case, no individual results of protein/hormones was worrisome. It was slight variations for each which added up to my higher risk. When one level is extremely off the charts, they tend to be more worried. - Is it too late to redo a blood test to compare?
It's not so much that it's too late but that if we got two different results, which one would they trust? Would they say "oh you are fine now" knowing that a certain day you tested positive? That would be risky.
- At what point was something noticed? Was the ultrasound and first blood sample ok?
The ultrasound was fine. The NT scan measured at 2.1 which is slightly above average but still below the "worry-zone" of 3 mm. - What are the real risks of the procedure? What are CHEO's track records for miscarriage percentages following an amnio?
1/400. - What genetic anomalies do they test?
Trisomy 13, 18, 21, Spina Bofida and abnormalities in the XY chromosomes. - Should we wait until the 20 week ultrasound before doing an amnio?
The ultrasound could detect markers but can't confirm either way. Some mothers have 100% normal ultrasounds but give birth to a child with Down Syndrome. Some have a lot of markers present but give birth to a child without the genetic anomalies. - Is it possible to book then cancel?
They are not against that practice but would rather we wait until we are sure as it is a short wait. The procedure is normally done in the morning and the results are known 2-3 days later. If for some reason the "quick result" test is not conclusive, they need to send the samples out for a more complex test, which takes 3 weeks and checks for more anomalies. - What kind of Symptoms can I expect? If there are issues, where do I go / who do I call?
Slight cramping and spotting can be expected. Most women only get a tiny bit of cramping and no blood. In the event the cramping worsens, head to the ER. Most miscarriages happen 2-3 days after so it's not like I would need to worry for weeks after.
So, what will we do now that we have the information?
The risk of doing the amnio is not as high as most claim. Having peace of mind for the next five months would also be great. Knowing this, and especially that we are not sure what we would do if the results came back positives, I think it is worth it for us to go through with the procedure.
Am I a bit scared? Yeah sure. I'm scared I'll be the 1/400 that ends up having a miscarriage and then feeling horrible about it. I'm scared the results will be positive and what that will mean. But being scared is not a good reason for not knowing the facts. I would rather make an informed decision than close my eyes and hope for the best.
What's next?
The genetic counselling will give you all the necessary info to book your appointment (which happens in a hospital). I will call on Monday to book. You don't need much except your health card and a proof of your blood type, which you can get from your doctor easily. I will get that at my appointment next Tuesday.
Thanks to all of those who have told us they are behind us no matter what we choose. Your support is appreciated.
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