By Joe & Jamie’s mum Catherine

Joe was born by natural delivery and all though premature by 5 weeks he weighed in at a healthy 6lb and was completely fine, we were sent home a couple of days later. Joe was well for the first few weeks then developed a cold which didn’t clear up so I went off to the doctors, the GP asked what heart condition he had, which took me by shock and I asked her what she meant she said had no body told me that he had a heart murmur, from there we were sent straight to the hospital, he had lots of tests done but as his stats were all stable they did not need to rush him off to a cardiac unit, so a urgent appointment was made, we went to the Evelina a week later and Joe was diagnosed with a VSD not a very big one, no treatment was required they would just watch and wait, well 8 years on we are still watching and waiting the VSD has not got any smaller and because of its position right next to the aortic valve it is causing a few issues with the valve again nothing that needs treatment just yet, he is a healthy sporty 8 year old.

Jamie was born in 2007 again premature but by nearly 8 weeks this time, he was born by emergency c-section while I was under general anesthetic, when I woke I found out he was in special care, he was holding his own after a short period on cpap, he continued to be tube feed for a few weeks while he was in hospital, we had found out that yet again the doctors could hear a heart murmur, but was told it was innocent, they wanted to discharge us to another hospital to free up beds, I said I was happy to be moved but only if Jamie had a echo before they moved us, this was arranged but I was not aware the doctor doing the scan had no experience of heart echo’s so when he told us all was fine we believed him.

We moved hospitals and stayed for another week then they said we could go home even though I was not happy that Jamie was not feeding properly, they explained it was just because he was a early baby and that he would get stronger as the days went by. So we went home, it just happened to be Joe’s yearly cardiac review the next day, so we took Jamie along with us and very cheekily asked if Joe’s cardiologist could have a listen to Jamie, he agreed and once he had listened he said he wanted to do a echo right away, then it was all a blur, Jamie was diagnosed with severe Aortic Stenosis, we were told we were very lucky to have been seen that day as this needed treatment within the week, we were allowed home with strict instruction to return to our local hospital every day so they could monitor Jamie, and within a week we up at the Evelina being admitted for a balloon valvuloplasty.

This went well, Jamie is now 5 he started on medication at 4 years old and has just had his yearly review, he now has severe regurgitation of the aortic valve and some stenosis, he left side of the heart is very enlarged but his heart function is coping well, he is now on 6 monthly reviews and we know the next step is the Ross procedure, Jamie is doing well he does get tired easy and has some palpitations which scare him.
We have all now had genetic testing to see if there is any reason why we had two children with heart conditions but nothing has been found, it is just one of those things, they are our little stars.