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

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.

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.