CP and pulmonary valve stenosis Posted: 02-13-08 01:53am
Hi there,
My daughter was born 10 weeks earlier due
to thrombosis in the umbilical cord. I
noticed she had stopped moving in the
womb. My obstetrician checked her and her
heart rate were dropping as low as 60bpm
so the dr decided to do the emergency
caesar. She was born with pulmonary valve
stenosis.
She is now 2 years 9 months and has global
developmental delay. Every single exam we
did with her since the very first day she
was born comes normal, except for the
heart condition, which is mild.
After nearly 3 years trying to understand
what happened to her to this date doctors
are unable to establish a diagnosis. A
neurologist spoke to us about CP only a
year ago and this really explains lots of
things, including stiffness of limbs,
etc.
However, they keep trying to understand
the pulmonary valve stenosis and they keep
insisting that because CP cannot explain
the heart condition, that the pulmonary
stenosis is a sign of her being syndromal.
They mentioned Noonan Syndrome once, I
contacted Dr Noonan myself, sent her all
my daughter's reports and she didn't think
it was Noonan.
Because I have the feeling that doctors
are not too keen to talk too much because
of the consequences (one dr told me that
because they don't know what's happening,
they don't want to say anything because we
could sue them!), I always ask questions
which remain unanswered.
My question is: is it possible that the
pulmonary valve stenosis occurred alone,
it was an isolated problem with no
syndrome 'attached', and that all the
delay that she has been experiencing is
due to CP? She is visibly more delayed
physically than mentally, so I was just
wondering if this is possible: that she
was born with a heart condition and
because of the thrombosis of the cord,
there was a lack of oxygen and that
resulted in CP.
I am just thinking about hypotheses to
explain her condition and whilst doctors
try not to say what they think perhaps
with fears that what she really has is
more complicated than that, I wanted to
know if my theory is possible.
Many thanks in advance and sorry for the
so very long email!
Cheers
Silvia
|
Tmddyan
Moderator
Joined: 13 Jun 2006 Posts: 4107 Location: post falls, id usa
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Posted: 02-13-08 16:24pm
I think that it could have happened alone
even with out the cp. Its possible. I
would be persistant. get tehm to talk
about it. you have the right to know what
is going on with her.
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