Cerebral Palsy Forum - CP and pulmonary valve stenosis

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