The results of the karyotyping of her blood sample have come in. They show, as was expected, that she has Trisomy 18. Perhaps because they wanted to get results back quicker or because it is standard practice at that particular genetic screening center, 15 cells were karyotyped and all fifteen showed the extra chromosome at the 18th pair. As far as the doctor is concerned this shows that Arrowen has Non-Mosaic (or Full) Trisomy 18. As far as her Dad is concerned, statistically speaking 15 cells out of a population of billions from one extraction of blood prooves nothing of the kind. From the quick bit of research I have done since arriving back home, I can say that the science would back me up. Not to say that she doesn't have Full Trisomy 18, just that it would not be accurate to say that it is 100% certain her Trisomy 18 is Non-Mosaic.
Beyond that I have also found reports of adults with Full Trisomy 18, so the odds may be heavily stacked against her, but if she were to live to adulthood she would not be the first. And if anyone has the ability to do so she certainly fits the bill. I will leave it to a separate piece to write about that aspect of her and keep this one confined to the practical.
After informing Nicole and me of the results the doctor spoke about the longer term plans for her. It would seem that the general tenor is to not go about performing various heart surgeries, clubfoot corrections, etc and to let her come home with us as soon as it seems feasible. While I understand the logic I am also aware that to completly forego treatment of various difficulties with the mindset of 'why bother to fix a foot that will never be walked on' can lead to an adult who cannot walk because her foot was never fixed. It would seem, however, that her cast will be coming off, as her toes are looking a bit puffy anyway. I know she'll be happy with that, but it'll take away the weightlifting routine she's been on for the last two days of completly raising that fully encased leg up over her pelvis.
The one procedure they feel they might want to do is put in a gastric feeding tube before sending her home with us. Obviously, we'll be encouraging Arrowen to show them that she won't need such things. Basically they feel she won't have the level of control over her swallowing to feed normally. Given the very little amount of time she has been allowed to improve her skills, it seems a hasty conclusion. Hmmm, there seems to be a theme developing here. Well, I guess it is not a new one for me: questioning authority and received wisdom at every juncture.
In the Kalamma Sutta, Buddha says that there are 10 specific sources not to accept as truth without verification:
I think that pretty much covers all the bases, but obviously it's implication is to not believe its own truth without verification too.