Wednesday 24 April
We've finally, after what feels like moths of waiting, had responses from Dr Frank Hanley at Stamford in the USA (world expert in pulmonary atresia) and from Dr William Brawn at Birmingham Children's Hospital in the UK (top semi-retired pediatric cardiological surgeon in the UK). Both said that there are probably things that can be done to improve her pulmonary atresia but only if and when she is no longer suffering from heart failure.
Dr Hanley suggested trying an angiogram of her coronary arteries to try to determine if problems within those arteries were the cause of the heart failure, in the hope that it may be something that is reversible. It's not clear what he might be hoping to find and Dr D was not too keen to subject Shoshana to an angiogram for something that is probably quite speculative, at least for the next few months anyway.
So I think we've now got the opinions of the all the experts in the UK and most of the top experts globally.
And our summary of their collective opinions is something like: keep going with the medication, make sure she's eating well, live life as normally as possible, celebrate and enjoy that she's doing so well, and pray - because things could still get a lot worse.
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