Baby Ryder in hospital

Ryder's story: Hypoplastic Left Heart Syndrome

“My son Ryder was diagnosed with Hypoplastic Left Heart Syndrome at my 12-week antenatal ultrasound."

I don’t know why, but I went to my appointment that day with a feeling things weren’t right.

The word to describe what I felt when I was told my baby was going to be born with a severe and complex heart defect, was gut-wrenching. I was beyond devastated.
Baby Ryder

I was offered termination up until 36 weeks and then palliative care when he was born, as his chances of survival were slim to none. But I was determined that my son was going to be a fighter and I continued with my pregnancy.

I cherished every movement, every ultrasound and every day of my pregnancy, and prayed that he would make it. I didn’t care if I only got a minute, an hour or a day with him, all I wanted was for him to know how loved he was.

The day Ryder was born, the room was filled with about 20 doctors and nurses who were ready to move him to the Royal Children’s Hospital. Ryder had his first open heart surgery at 48 hours old. After this, everyone knew he was meant to be here. We had a fighter!

Ryder had the doctors amazed at how well he did and he was discharged to Ronald McDonald House at 19 days old. He had his second surgery at four months old and at five months old he was discharged. We were sent back home to NSW after we’d relocated to Melbourne when I was 38 weeks pregnant. It was an amazing feeling!

In 2020, he had the last of his three heart surgeries which was a huge relief.

Ryder is now nine (Feb 2024) and he’s thriving! He’s such an amazing kid. I couldn’t imagine my life without him and our three other children - Levi, his older brother who adores him, and his younger sisters, Addi and Indi.

Ryder is doing well at school and enjoys learning maths. He has a passion for swimming, and although he can't play footy (due to the medication he is on) he is a massive Geelong Cats fan and loves attending games.

Ryder is also doing well from a cardiac point of view and has yearly echo, ECG, bone density and cardiology reviews.

Tree-year-old Ryder

Although it was a tough journey and a rough start to life, I wouldn’t change our story for the world. It’s made us really appreciate the little things in life and to value every opportunity you’re given.

Watching your child go through something like an open heart bypass surgery is definitely the hardest thing I’ve ever had to do. Not a day goes by where I don’t wish I could take his place.

There is no answer for how long he will be here but I’m determined to make sure he has the best life possible! He has the best personality and the biggest heart out of anyone I’ve ever met – even if he was born with only half a heart.

I’m proud to be a heart mum and I’m glad Ryder chose me,” - Hailey, Ryder's mum.

You can help kids like Ryder by supporting vital discoveries at the Victor Chang Cardiac Research Institute.

Acknowledgement of Country

The Victor Chang Cardiac Research Institute acknowledges Traditional Owners of Country throughout Australia and recognises the continuing connection to lands, waters and communities. We pay our respect to Aboriginal and Torres Strait Islander cultures; and to Elders past and present.

Victor Chang Cardiac Research Institute - The Home of Heart Research for 30 Years