Jake was diagnosed with complex congenital heart disease (pulmonary atresia, double outlet right ventricle, hypo plastic right ventricle , VSD, ASD) my 20 week scan. I was told that he would probably not survive birth and was flown to Southampton at 8 months pregnant.
Jake was born and taken straight to the NICU and had his first lot of heart surgery at 1 day old, which seemed to go quite smoothly. We were discharged home but at 10 days old he went into heart failure and spent most Of the next 8 months on hospital as he found it hard to feed and was quite poorly if he caught just a simple virus.
At 9 months old Jake had a repair surgery called the Rastelli - he was very poorly after this operation and went into multi organ failure. We very nearly lost Jake during the recovery of this surgery. It was at this time he had 2 strokes.
Whilst in hospital Jake had a severe chylothorax and needed a chest drain which meant we spent our first Christmas and new year together in hospital.
When Jake was 2, he needed further surgery on his heart to replace and repair various valves. After surgery they were unable to get a steady heart beat back and a pacemaker was the last resort as he was so young, one of (if not the youngest) child to be 100% paced.
Inbetween Jakes first open heart surgery and today he has had lots of "uninvasive" surgeries such as Cardiac Catherers.
After Jakes 2nd lot of surgery things went relatively (dare I say) well. Obviously any infection hits him really hard and he can't do what "normal" children his age do. He doesn't attend school full time either as he finds it too tiring.
He spends a lot of time to and from Southampton for Cardiac Clinics and Pacemaker clinics.
In June this year Jake was rushed to hospital unconscious and was diagnosed with Staphylococcus aureus as you can imagine this made Jake extremely unwell and within days he was air ambulanced to Southampton to the cardiac ward where he was later diagnosed with Endocarditis. It was very touch and go for 2 weeks and Jake spent just a few days shy of 2 months in hospital. Since this he has not fully recovered and is unwell frequently and spending time in hospital. Jake has very poor circulation and is unable to warm up from being cold and cool down from being hot.