[tri-wings] Who Lives in Kentucky?
- From: "Karen Schuler" <karens@xxxxxxxxxxxxxxxx>
- To: "Tri-med" <Tri-Med@xxxxxxxxxxxxx>,"Tri-Wings" <tri-wings@xxxxxxxxxxxxx>
- Date: Tue, 25 Jun 2002 13:01:52 +1000
I thought this article may be of interest. It came through on another list.
http://www.wpsdtv.com/cgi-bin/view.cgi?/200206/24+BIRTH-DEFECT-CAUSES-CONCER
N_news.html+20020624+news
I am upset though that they have used a photograph off my web site in the
story!!!!!!!!!!!!!!! I am not sure how the parents of that child would feel
about it either - especially as he didnt have T-18 anyway!!!!!!!!!!! It was
obviously chosen as a heart wrencher type photograph - they could have used
pics of Alex :-)) Not sure that I am game to write to his mum or dad and
tell them.
I dont think that they will ever say that its because of contaminants,
especially if they havent tested the parents. In past cases like this
(notably New York) the problem turned out to be parents who were themselves
mosaic.
Other problems that I have with the story is that its an Ob that has done
the notifying not a geneticist. His description of the physical problems of
T-18 is highly inaccurate as well!!! Not to mention the birth incidence
figures is he really seeing more T-18 or just more of the general chromosome
anomalies because if so 1 in 100 is highly accurate - but even allowing for
editorial licence............
Have the parents been tested?? Because its an Ob reporting this I doubt it.
Extra testing like this in the US is hard to get without a good reason.
Is the extra chromosome maternal or paternal?
Is there also an increase in the miscarriage statistics and infertility
statistics? (for if it were contaminants one would expect it to be effecting
males as well. paternal trisomies usually result in infertility or
miscarriage)
Is it a small community - the US does not keep statistics of chromosomal
anomalies (here is Australia all diagnosis of chromosomal anomalies are kept
in a central register).
What are the termination laws and attitudes in this town? We know that the
incidence of T-18 is a lot higher than reported, but that many result in
early spontaneous abortion or elective termination. (If you include the
elective termination in the statistics then the incidence is much higher,
include the spontaneous abortions and its higher still.
The birth statistic figures are very general as there is no way of telling
accurately what the incidence really is because there are no figures. The
figure that they have quoted 1 in 8000 births is a very old figure - the
more commonly accepted statistic is now 1 in 2,500
But I thought some of our Kentuckians may keep an eye on the situation for
us???
Hope is itself a species of happiness, and, perhaps, the chief happiness
which this world affords.
-- Samuel Johnson
Keep Looking for Rainbows!!!
Karen, Mum to Alex (7, T-18 mosaic)
Sydney, Australia
http://members.optushome.com.au/karens
http://www.trisomyonline.org
Building ___ooOOoo__ Rainbows
www.trisomyonline.org
Families Helping Families On-line
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