Anoosha was born full term. At day four we realised she wasn’t feeding properly and was going blue. She was diagnosed with tetrollogy of fallows at 11 days old. When she was 4 months, she had her open heart surgery. A month later, she had malrotation of the bowel and had open surgery to fix that. She had her first surgical peg fitted at the same time, but the more she was fed, the more she lost weight. She got so bad that she started to break her bones. She broke six in one go.
At the age of 1 she was started tpn (total parenteral nutrition) where she was being fed into the heart and through her blood.
At the age of 3m she had a cardiac arrest and was in intensive care for three weeks. Her seizures got worse. In total she has had 5 arrests and about 7 intensive care visits. She now has a loop recorder fitted into her heart to monitor her heart rate at all times.
She has spent 4 years in hospital and only 4 months at home.