Living with HLHS: ‘People say I look well but I have half a heart – every day is a challenge’

Amy Poynton was born with the left side of her heart underdeveloped, and underwent her first open heart surgery at just four days old. She talks about the daily challenges, and the joy of helping children with the same condition

Amy Poynton (19) has hypo-plastic left heart syndrome (HLHS), a rare, congenital heart condition. Photo: Steve Humphreys

Gemma Fullam

Scroll through 19-year-old Amy Poynton’s Instagram grid and you’ll find a post flagged with a trigger warning. Behind that warning is a disquieting photograph of newborn Amy in an incubator, her tiny body barely visible beneath a complex web of tubes, bandages and breathing apparatus.

Underneath the post is this poignant line: “I can’t begin to imagine how this would have felt for my parents, to see their first-born daughter like this.”