Hypoplastic Left Heart Syndrome: Ellis’ Story

When Ellis was born, no-one knew only half of his heart was working. When mum, Chelcie, became concerned, Ellis was rushed to the doctor and diagnosed with hypoplastic left heart syndrome (HLHS). This is their story:

It all started on December the 21st 2019, when Ellis was 2 weeks old.

We came home after doing a bit of shopping and I noticed he was sleeping all the time and also being very sick.

We phoned 111, because I know something wasn’t right. We went to an out of hours doctor’s appointment at around 10pm.

As soon as the doctor looked at Ellis, she rushed him off to another room. ​​​

‘He’s really poorly,’ she said. ‘He has a heart problem.’

They started to drill into his knees. Because of how poorly he really was, he spent the night in hospital before being rushed up to Bristol.​​​

Ellis was diagnosed with hypoplastic left heart syndrome (HLHS), which basically means he only has half a working heart. The doctors said he shouldn’t even have made it to two days old. But our little fighter had made it this far, all on his own.

​The next day, Ellis want for his first operation within an hour of being at Bristol.

Two weeks later, they told us he needed open heart surgery. He spent weeks in intensive care after.

We have good days and bad days and we know how lucky we are to still have Ellis here with us. He has another big operation coming up, but is now four months old and doing well.

What is HLHS?

We’ve prepared some information that you can share with family and friends about Hypoplastic Left Heart Syndrome here.

Find out more about how we can support you here.