There is a tiny charity concerned primarily with training sonographers in early detection of CHD at the 20 week scan. They attend hospitals all over the country to deliver training. We can see they work tirelessly to deliver training to as many hospitals as they can, as often as possible.
They provide this training with very limited funding compared to other larger charities.
We've learnt that our local hospital last received this specialist training from this charity just days before we attended for our 20 week scan. Co-incidentally, this charity delivered training just two days before we attended in March 2022.
This has been heart breaking for us.
Perhaps not all sonographers received the training. Perhaps the training wasn't embedded into practice or cascaded appropriately. Perhaps it just wasn't possible to detect Molly's heart condition at this time. Unfortunately we'll never know the latter as Molly's heart views weren't retained by our hospital.
We found it incredibly hard being repeatedly dismissed by professionals in the 10 months leading up to Molly's diagnosis. We spent so much time at hospital or seeking help from our GP. We felt helpless. We presented her so many times with numerous symptoms of CHD. We feel system failings were deflected and projected back onto us as patient health anxiety. We were reduced to tears on occasion and didn't know where to turn. All the while Molly had an undiagnosed complete AVSD.
We've tried to deconstruct what happened to us in an attempt to understand and to hopefully prevent others going through what we did. This is what this campaign is all about.
We feel it's important to stress that to us, this tiny charity has remained neutral over the fetal cardiac view retention debate.