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Because of her high profile, this news has been splashed across most of the UK's national tabloids. Unfortunately yesterday, two papers, the daily Mirror and the daily Mail; printed some information on the condition. The source of this information was a very outdated article on ONH posted on the RNIB website. Amongst other things it stated that ONH and SOD was caused by the mother taking cocaine or drinking alcohol throughout the pregnancy.
The papers made it sound as though they had actually talked to the rnib, when they hadn't.
As you know this was once the view, all be it a few decades ago! Doctors no longer believe this is the case for most cases of SOD/ONH - and in fact there is no medical evidence at all linking this condition to drugs or drink.
I had several very angry and upset parents phone me yesterday, and due to this I contacted the rnib, who have issued the statement below to parents and have contacted the press office to try and correct this unfortunate incident - hopefully todays articles will be more accurate and more sensitive.
Please feel free to contact me if there is anything you wish to dicuss regarding this matter.
With Best wishes
Alison Baker - FOCUS - UK
RNIB Statement
"As you may be aware there has been a statement attributed to the Royal National Institute of the Blind (RNIB) in the national press in the last two days about Jordan's baby who has been diagnosed as having optic nerve hypoplasia.
We have been quoted
in some newspapers that optic nerve hypoplasia was linked to alcohol and
drug intake during pregnancy. We have consulted today with medical experts
and in summary, their opinion is that there is currently no known cause
of ONH. There is a view held by some clinicians that there is the possibility
of a small number of ONH cases being linked to alcohol or drug intake
but this connection has never been proven.
We would like to stress that we did NOT release the quotation attributed
to us to the media; the statement was actually taken directly from our
website, as part of a factsheet has now been removed. We would like to
take this opportunity to apologise for the upset and anger that this may
have caused."
