Hypoplastic Left Heart Syndrome: Edison’s Story

Edison’s heart condition, Hypoplastic Left Heart Syndrome, was diagnosed before he was born. He arrived during the coronavirus pandemic and is now awaiting his second open heart surgery. His mum, Navarna, tells their story so far:

Edison had an antenatal diagnosis of Hypoplastic Left Heart Syndrome (HLHS). This is a congenital heart defect (CHD) that affects the normal flow of blood through the heart. It ultimately means that he only has half a working heart.

When he was born at Leicester Royal Infirmary,  Edison was taken to NICU and intubated before being transferred to Glenfield.

He had his first open heart surgery (OHS) – the Norwood with ASD repair- at just three days old. After 16 long hard days, Edison was discharged and we are now continuing with his recovery. We are shielding at home due to the coronavirus and Edison being high risk.

We are awaiting a CT scan to see when Edison is ready for his second stage surgery, the Glenn. But due to the coronavirus we will have to go to Birmingham children’s, where only I will be able to attend. His second mum won’t be able to see him or be with us during Edison’s surgery and recovery.

Find out more about Hypoplastic Left Heart Syndrome here.