We've just waved goodbye to Martha Grace who has gone to stay with my Mam and Dad for the night. Tomorrow we're going to Great Ormond Street - without Martha Grace.
Osian Llyr had his last ECHO and ECG at Great Ormond Street back in July 2011, I was 29 weeks pregnant with Isabella Nicole at the time. That day we assumed that the next time we would visit GOSH would be to bring the baby I was carrying when she would be 2.5 years old.
Our visit to GOSH for Osh and Isabella is totally unrelated to Martha's condition, even if Martha had been born Heart Healthy she too would also need to be seen at GOSH. Regular readers to my blog will know thatmy Brother has Hypertrophic Cardiomyopathy (and a whole host of other Heart Conditions) and I carry an Actin Gene mutation which I have inherited from my Father - my children are screened to watch for any changes to the structure of their Heart or any abnormalities in their ECG (I have a non-pathological Q Wave) My cousins are also seen regularly by the same team. As my children are far to young to be considered for Genetic Testing, they will be seen every 2 - 3 years by the Cardiomyopathy Clinic in the hope they can pick something before it's too late (Martha was tested after she was born, she doesn't have the Actin Gene mutation)
But this is an area that the UK seem to be behind the times; the lack of screening for Heart Conditions. Last week Welsh International Rugby player died after suffering a Cardiac Arrest (which is totally different to a Heart Attack - please don't call it that!) I was speaking to my Mam that night and she asked if I thought it would be caused my an undetected Heart Conditions and I said I was almost certain that a post mortem would confirm that to be true...and I was right. I remember the football match where Fabrice Muamba collapsed on the pitch...for it to be revealed later on that he had the same Heart condition as my brother. Why are we not screening them as part of their medical as they join new teams? Why aren't kids and adults seen every two to three years as standard? Why aren't babies given a Pulse Oximetry test before being allowed home from the Hospital?
If you've never been affected by Heart Defects this probably won't anger you as much as it does me; but fatalities happen all too often and strike out of nowhere.
Tomorrow's appointment is with Dr M T Tome Esteban; she has been my Brothers consultant for years and it's thanks to her that Martha was ever seen at GOSH...she referred me to Dr Ian Sullivan. We last saw her on the 21st January last year - the night before we brought Martha home. I could have flung my arms around her and cried - without her Martha wouldn't be here.
Tonight I am praying to God that we get good news tomorrow, that Osian and Isabella's Hearts don't have any structural abnormalities. Oh - and that Isabella behaves when it's her turn for an ECHO...she's already said she doesn't want to have any jelly on her belly!