[tri-wings] Re: SOFT UK conference

Hi - just a bit more info on the nuchal translucany scan.  It was developed
by Prof Nicolaides at Kings in London.  I lost my baby boy Alexander, to
Edwards at 37 weeks.  For my next pregnancy I went to the Profs clinic in
London to have the nuchal fold test done.  He told me that the test can
detect 80% of Downs babies, but just 60% of Edwards.  He gave me a 1 in 390
chance of a genetic abnormality, and recommended a detailed scan at 20 weeks
to pick up any of the physical abnormalities that present with T18.  Luckily
my scan was fine and I went on to have a healthy baby boy, Ben.

He recommended that if I chose to have a CVS or Amnio done, to ask for the
patient miscarriage rate for the person performing the procedure.  Most
doctors quote the standard 1 in 100 for amnio, 1 in 50 for CVS, when these
stats were obtained from doctors in a research hospital who were doing the
tests all day.  Less experience doctors may patients with a much higher
miscarriage rate.

Diane

-----Original Message-----
From: tri-wings-bounce@xxxxxxxxxxxxx
[mailto:tri-wings-bounce@xxxxxxxxxxxxx]On Behalf Of Sharon & John
Boneham
Sent: 11 May 2002 20:28
To: tri-family@xxxxxxxxxxxxx; tri-wings@xxxxxxxxxxxxx
Subject: [tri-wings] SOFT UK conference


Hi,
     Just thought I'd give you all an update on the conference that took
place today.  I was amazed that after 6 years since John and I last attended
a conference, Christine Rose still recognised me (and yes, Karen, I passed
on your message and Chris asked after you saying what a dynamic woman you
were).  During the welcome session, there was also a letter that had been
received from Demi, letting us know how she was getting on....most of us
know anyway due to her correspondence here.
     Dr Ruth Newbury-Ecob gave a speech on genetics and told us about the
new up and coming ways of earlier diagnosis of Edwards and Pataus by way of
FISH (a new hi-tech way of highlighting chromosomes) and a 'nucal scan',
something to do with having tests done earlier without having to experience
an amnio or CVS test, but there was so much to say and so little time to say
it all.
     The workshops provided are always good to attend, depending on your
needs and I was surprised but happy to see that there was one specifically
for dads (some do get left behind in such circumstances).
     After lunch (which, as John says, was like a banquet), we listened to
one dad give a heart-rending story of the loss of his and his wife's baby
girl from Edwards, followed by a long period of being unable to get
pregnant, which resulted in humiliating tests, etc and eventually adoption.
It was then sad to learn that they became pregnant and had to terminate due
to anencephaly (sp?).  I'm pretty sure there wasn't a dry eye in the room.
Thankfully they went on to have a healthy son.  I'm sure I would not be that
brave to stand up and tell my story, I can't even do tat here on the list,
but this man and his wife had my admiration.
     After that, it was workshops again for an hour, followed by any
questions and then goodbye.  It was a good day in all with lots of tears and
laughter and a great chance to see some familiar faces that John and I
hadn't seen for 6 years.
     For those Ukers that may be interested, the 2003 conference is being
held in Northampton on 10th May at the Hilton Hotel again.

All in all, it's been an emotional day and one where again, it makes me
realise that by talking to people who have similar experiences to John and
I, we aren't alone as sometimes we might feel.  But everytime I hear John
talk about our experiences and how he feels and him knowing how I feel, I
remember just one of the many qualities of why I married him.  We might have
our pain and our disagreements when it comes to children, but I could never
have got through Emily's death without him.  I'm proud to say I love him
dearly and he's the only solid rock that has kept me going for so long.
Thankyou John.

Sharon

'Let your heart guide you.  It whispers, so listen closely'.
The Land Before Time

For Emily (T18) 25th February 1996
Our Little Angel /\i/\
www.geocities.com/shaz31uk/Welcome.html
www.geocities.com/trueblueangel_uk/little_angels.html





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