Kellie with newborn Ollie

Kellie's story: Her baby boy's fight for life

Kellie's pregnancy had been normal, she had no idea her precious baby had a damaged heart

"The day we found out I was pregnant we were so happy. It was time to start our family. My pregnancy was average, until during one of my scans they found I had gestational diabetes and my baby had developed an ectopic heartbeat.

Newborn Ollie after first surgery

I remember an awful feeling of worry came over me, but the nurse assured us that it was quite common and that in most cases it would go away when the baby was born. Unfortunately I went into spontaneous labour at 29.6 weeks gestation.

As soon as he was born, my partner cut the cord and then Ollie was taken aside. He was breathing but very quietly. They put him straight on CPAP and my partner accompanied him to the NICU while I stayed behind.

I was able to hold him the next day but only for an hour. He was so fragile. By this point, they could tell us that Ollie had bigeminy but were unsure what was wrong with his heart. It all happened so quickly. Going from excited soon-to-be new parents to a premature baby with congenital heart disease. At five days old, Ollie was transferred to the NICU in Westmead Children’s Hospital, seen by cardiology and diagnosed with several heart conditions.

Ollie went through two major surgeries before he was even 12 weeks old; it was unbearable to see my tiny baby covered in tubes and wires.

Newborn Ollie with his dad

I was an emotional wreck the entire time, but my partner was great, staying strong for both of us. There was so much to cope with but seeing how strong our tiny baby was made us be even stronger than I thought possible.

Ollie did require pacing wires for a short time after surgery but otherwise recovered well. The next month was spent weaning Ollie off breathing support and preparing us to take our baby home for the first time. Ollie was unable to drink orally so we also learnt how to care and reinsert his feeding tube if it came out. So, at 115 days old, Ollie finally came home.” – Kellie, Ollie’s mum.

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