Charlie was diagnosed with TAPVD (total anonamaly pulmonary veins drainage) at 4 weeks old at a routine visit to jaundice clinic that day will stay with me for the rest of my life I went to a clinic with a normal healthy baby and left on my own with a baby who had a rare heart condition and was on a high dependency unit about a week later Charlie had open heart surgery to correct his condition and 8 days later we where allowed to bring our baby home.... everything was totally fine until I started to notice his breathing wasn't right and a heart scan and ct scans confirmed Charlie had acquired pulmananry vein stenosis (PVS) his pvs is very nasty and progressive and it affects all of his pulmonary veins this is a life limiting illness he is left with because of his first surgery leaving him needing intervention every 4 to 6 weeks in total Charlie has had 3 open heart surgerys surgery on his diaphragm and a surgery to clean his wound out when he got an infection he has also has up-to-date 6 catheters for ballooning of his pulmananry veins he has a stent fitted he spent more than half his life in and out of hospital we have been told that it is very unlikely Charlie will reach school age
Where we are now
We are at home with Charlie and we have been for the longest time ever 3months and counting no on knows if charlie will survive this and at The moment we are told to make as many memories with him as we can this trip would mean the world to us as a family and it would give his big sister the best memories possible with her little brother ❤