12:06pm Wednesday 23rd May 2012 in News by: Ben Endley
MPs listened with rapt attention as a mother from Kings Langley made a passionate plea for greater awareness about her daughter’s rare heart condition.
Alexandra Smith, 33, of Ridgeway Close, addressed politicians including shadow health secretary Andy Burnham and MP Bob Neill at a special reception on Monday May 14.
She told the story of her four-and-a-half year-old daughter Georgina who was diagnosed with Ebsteins Anomaly, a rare heart condition, in February 2010.
Mrs Smith said doctors repeatedly failed to spot warning signs of the condition during ante-natal scans.
Instead, the family were forced to make repeated visits to medics until they finally received a diagnosis when she was two-and-a-half.
She is now campaigning on behalf of the Children’s Heart Federation to have ‘Think Heart’ leaflets placed in GP surgeries nationwide in the hope of raising awareness and avoiding parents suffering similar outcomes.
She said: “From when she was born I could tell something wasn’t right and I was practically begging doctors and health visitors but nobody was paying any attention to me.
“I am a qualified nursery nurse and have worked with children for 16 years so I know the developmental cycle.
“Her hands and feet were freezing cold and her skin was mottled, we kept going to health visitors and saying something was wrong but we were always told to go away.
“Eventually, after more persistence we saw a cardiologist from Great Ormond Street, he listened to us, did a scan there and then and told us what it was.
“I’d like to think if this leaflet had been around for us we wouldn’t have had to go through all of this.”
Georgina is currently at nursery but is due to start full time school in September although her mother fears it could put too much strain on her.
Alexandra and her husband Martin, a photographer, recently acquired a wheelchair which she said makes travelling any small distance less of a challenge.
She added: “It is a rare heart condition affecting one in 250,000 children, it means on the right hand side of the heart the top chamber is small and the bottom one is long and distended while the tricuspid valve doesn’t work properly.
“They will need to do surgery when she is 10 and she is on beta blockers at the moment, that will be full open heart surgery or even a heart transplant which is quite a shocking thing to be told.”
The Children’s Heart Federation says one in 133 children is born with a congenital heart condition and in a third of cases this is life threatening, making early diagnosis vital.