Aiden’s Story

My son Aiden was born 3 weeks early due to a rare condition I developed during pregnancy called Cholestasis.   Within an hour or so of being born, it was noticed that he had difficulty breathing.  He was ‘worker breathing’ with the area under his lungs being drawn in with each breath.  He stayed in the NICU for ten days before being sent home, without oxygen.  They thought that perhaps he just had issues breathing from being born early and at a large size (8 pounds, 9 oz) with lots of lung area to develop.  He was still pulling in under his chest but they felt his oxygen sats were normal.  His worker breathing seemed to resolve after a while.

Aiden seemed to be fine until 9 months when he caught a cold and started worker breathing again.   At that point we ended up in the hospital for 2 weeks while he had different tests. He was sent home with suspected NEHI.  It was later confirmed by CT.  When we left hospital he was on 1 litre of oxygen 24/7. Now Aiden, at 20 months is on 3/4 litre and can come off for a few hours each day.

Aiden is very happy and he light up our lives!  He is very smart, playful and fun!