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Ollie's Story:
The little battler born with a damaged heart

Two serious heart defects and two major surgeries before he was even three months old

Ollie aged one month

Kellie’s pregnancy had been going smoothly, until her 20-week scan picked up an ectopic heartbeat, which is where the heart skips or adds a beat.

With Christmas fast approaching, follow up appointments were delayed and then, Kellie went into early labour.

Her precious, tiny baby boy Ollie was born nine to 10 weeks early which was worrying enough. But then Kellie and her husband Paul received a devastating diagnosis – their baby had a severely damaged heart.

What is congenital heart disease?

Congenital heart disease is the term used for abnormalities in the structure of the heart which are present from birth.

It is the most common birth defect in Australia and heart defects can vary in severity.

What heart defects did Ollie have and how were they treated?

Ollie had two major heart defects. An opening between the two major blood vessels leading from the heart and a double outlet right ventricle (DORV).

“It really was just a blur, nothing seemed real,” says Kellie “I felt so helpless and didn’t understand what was going on, my way of copying was learning about his conditions.”

After two weeks in intensive care Ollie’s heart went into atrial flutter. Doctors had to put him to sleep and shock his heart back to its normal rhythm.

At just one month old, Ollie underwent his first surgery where his heart seized and stopped twice. When Ollie finally came out, his little heart was so swollen doctors had to sew a thin cover over his open chest as they couldn’t close it fully.

“There’s nothing that they can tell you to prepare you for seeing your baby like that,” says Kellie.

At 11-weeks Ollie had his second open-heart surgery, which lasted a grueling 10 hours but thankfully was successful. 

Ollie is now four years old and a happy little boy who adores feeding the ducks and blowing bubbles, but he will have to endure at least one more open-heart surgery in the coming years.

Ollie pictured with mum Kellie (left) Ollie is now a happy four year old (right)

Why is research into congenital heart disease so vital?

Research has the potential to help thousands of children in the future and prevent heartbreak from happening to more families like Ollie’s.

Shockingly, in eight of 10 cases, the cause of congenital heart disease is still unknown. That’s why scientists at the Victor Chang Cardiac Research Institute are dedicated to identifying as many causes of heart defects in babies as possible.

This is the first vital step to creating better diagnosis methods, treatments, and prevention of congenital heart disease.

What congenital heart disease research is the Institute doing?

There are several key research projects currently underway at the Victor Chang Cardiac Research Institute, including:

  • Undertaking genetic testing of families suffering congenital heart disease to help discover the hidden causes.
  • Identifying other drivers of congenital heart disease such as deficiencies during pregnancy, including iron and a molecule known as NAD.
  • Developing diagnostic tests for women who have low levels of NAD to see if increasing their B3 intake has the potential to prevent heart defects from developing.
  • Using cutting edge stem cell technology and 3D bioengineered microtissues (heart-in-a-dish) to understand the origins and mechanisms of hypoplastic left heart, a severe form of congenital heart disease.

These are to name just a few. Our scientists are dedicated to creating a future where babies are born with healthy hearts. By supporting the Victor Chang Cardiac Research Institute, you are part of that.

Donate now to congenital heart disease research