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    Revisione dopo che la coppia è stata erroneamente informata di un’anomalia fatale

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    1. feedthebear on

      A sad case and there’s plenty of people who won’t have any sympathy for them because they had a termination.

    2. CurrencyDesperate286 on

      “Rebecca Price and Pat Kiely were told that a blood test when Ms Price was 12 weeks’ pregnant with their first child in early 2019 was positive for Trisomy 18, a serious and rare genetic disorder, also known as Edwards’ Syndrome.

      A further rapid result polymerase chain reaction (PCR) test carried out in a Glasgow laboratory also showed Trisomy 18 had been detected.”

      Is it really the HSE’s fault if this was based on testing?

      Edit: ok looked at other articles and it looks like HSE staff gave shit advice:

      “Price and Kiely said they had been told the pregnancy was not viable and that there was no point in waiting for the results of a more comprehensive chromosomal analysis. An abortion was carried out at the National Maternity hospital in Dublin on 14 March 2019.”

    3. Trickcyclistia on

      It’s very very sad, I had this test for both of my kids, to be fair if the Harmony had come back positive I would have elected for termination too and I’m a doctor. False positives and negatives are just part of testing. It’s never going to be 100% reliable. Condolences to this family.

    4. Useful_Engineer_1792 on

      When we got the tests done we were told they only had up to a certain accuracy (very high but not 100% iirc) thus any decision that we might make had the risk that the test might have been a false positive. That would be the worst nightmare but it’s the limitation of the testing at the moment. There must have been some other negligence though or a mistake though by the hospital or testing company if they are all settling the case etc. It must have been more than just a false positive due to accuracy limitations.

      Edit: its not clear but other reporting seems to indicate that the either the testing or the analysis of the test was incorrect.

      Edit 2: seems like it was an incorrect interpretation of the results by the consultant(s) being the issue along with not following guidelines. The husband in the case is a paediatric orthopedic consultant from what I see reported elsewhere. So like like a big mess up by the consultant(s).

    5. HumoursOfDonnybrook on

      For anyone reading this who requires or has been advised to get genetic testing, there’s an amniocentesis test that you can get at around 15/16 weeks which is (I believe) the most accurate test widely available.

    6. LordyIHopeThereIsPie on

      I had a high risk result for T18 following a harmony blood analysis in 2018 at 13 weeks pregnant. I was advised to wait and have amniocentesis at 16 weeks. I find it extremely odd that this couple didn’t have or ask or were offered amniocentesis in their case as its conclusive. I was told throughout the harmony process it isn’t conclusive its only indicative. And I was also at Merrion clinic same as them. I was under a different consultant though.

    7. fifi_la_fleuf on

      This is a copy paste from a comment I made a few months back. I’ll keep shouting about it far and wide whenever it comes up. In my opinion the way NIPT is marketed and handled in Ireland is a scandal waiting to break. This couple aren’t alone and many people have likely terminated early without cause based on this test. It completely ruined my friends pregnancy and she was a ball of anxiety and fear for twelve months:

      A very good friend of mine got the Harmony NIPT at approx 12 weeks. Her result came back 95% for Patau’s Syndrome (FFA) and 85% for Turner’s Syndrome. The ultrasound looked normal and the consultant felt the results were very strange and unlikely since it would be borderline impossible to have both.

      She was advised not to get a CVS at 12 weeks, which biopsies the placenta, as there can quite commonly be issues with the placenta that don’t extend to the fetus. Confined placental mosaicism is one.

      She was instead offered an amnio at 16 weeks. When 16 weeks rolled around and the scan still looked good, she postponed the amnio.

      Long story short, she kept postponing the amnio due to the small yet not insignificant risk of it causing miscarriage. After a perfectly normal 20 week anomaly scan she decided against having it at all. She had a very healthy baby who’s now a happy and thriving infant.

      The NIPT is a screening tool, not a diagnostic. It shouldn’t be allowed here without proper pre information and post follow-up with a genetic counsellor (as it is in US and other countries). Many OBGYNs here don’t even understand how to interperate results, its sold as a diagnostic in many cases. This is so so dodgy.

      The NYT did a good exposé on how cherry picked the stats and data are and there are many many accounts of the results being wrongly relied upon to devastating effect.

      Head over to r/nipt to get a grasp of just how common false positives are. Nobody should be making decisions before they are armed with more concrete information by way of amnio or diagnostic ultrasound markers.

      https://www.thejournal.ie/abortion-holles-street-4641201-May2019/

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