Meet Tiny Light James

Images captured by Melissa DePape Photography

This beautiful boy is Tiny Light James. He is the light of his family and those that know him. James is a smiley, happy baby. His parents and older sibling adore him. James has a magical way of making anyone that looks at him smile. He is easygoing and one tough little man.

At 20 weeks gestation it was discovered that something wasn’t quite ‘normal’. A heart defect was diagnosed at a level 2 ultrasound and James’s parents were told that their baby had a 90% chance of a chromosomal abnormality. At 35 weeks amniocentesis was decided on to better prepare the other four children. Trisomy 21 was confirmed. 

James was born 2 weeks early. Labour was induced as his heart was stressed. James has coarctation of the aorta and unbalanced AVSD. His first surgery was at three days old. Even with the repair he was in congestive heart failure. With no energy to even eat, James was tube fed for six months. After a few more months of struggle James had a full heart repair. This surgery was difficult to recover from. Yet one month later, James began to thrive!

James’ parents do worry about how he will be treated in society. They hope that James will act as a teacher about Down Syndrome, showing how amazing people with Down Syndrome are. James’ parents wish for James is what most parents wish for their kids. “I hope he finds a way to fit in and I hope he dreams big.”

This boy is a blessing. 

Story by Angela Stephen-Dewhurst