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Oliver's CHD Story

My name is Jacinta, I live in Melbourne, Australia, and this is a story about my sweet son Oliver.

In November 2018, I was 20 weeks pregnant with my first child. I attended my morphology scan, excited as anything to see my baby. I already knew the gender after having the Harmony test when I was 12 weeks pregnant, so being able to see my son on that little screen again filled me with excitement. My NIPT Harmony Test results came back with low markers for all abnormalities, so there was no worry on my radar. I went to the appointment with my partner and my mother, a doting first-time father and grandma. The scan started as normal, but after the first hour passed, I knew something wasn't right.

After two hours, the sonographer turned to me and told me that there was something wrong with my unborn son's heart, and she wasn't able to view everything she needed - to say I was confused and heartbroken was an understatement.

From there, the care of my pregnancy forever changed. I was no longer considered 'normal'; I was now high risk. Having weekly scans, meeting with cardiology teams, genetic counsellors and touring the NICU halls and the Royal Children's Hospital. My son's condition was confirmed as Congenital Heart Disease (CHD) - Truncus Arteriosus Type 1, one of the rarest congenital heart defects. My pregnancy became about educating myself and those around me, doing all I could to understand what we were up against. We were informed that Oliver's likelihood of living until his first birthday was low - I was advised to terminate at 22 weeks.

Despite all odds, our beautiful son Oliver James Drum was born 8lb 5oz (2 weeks early) on the 22nd of March 2019. He was whisked off to NICU, where he spent just shy of 4 weeks. He was on heavy doses of heart medication and had a feeding tube placed at 48 hours old, but despite all of this, he was the biggest baby in NICU alongside those sweet premmie babies.

At just under 4 weeks old, he was taken by the PIPER care team to the Royal Children's Hospital, where he underwent his first open-heart surgery - he was barely a month old. The surgery took 8 hours to help repair his broken little heart. Recovery was hard. He spent 8 days on life support, and I could not hold him - he underwent kidney dialysis, collapsed lungs, heavy drug withdrawals, and so many setbacks that saw us spend another 4 weeks in the hospital.

We came home after a very long 8 weeks. Oliver is now due for another open heart surgery in 5 weeks. He will be 2 in a month, which is a tremendous milestone. Oliver currently has 10 specialists ranging from a dietician, speech therapist, cardiology, physiotherapy etc., to ensure he is where he needs to be developmentally and health-wise.

February is heart month. Heartkids is a non-government funded charity that does tireless work for families like mine to help us through our toughest times. Every 15 minutes, a family receives the news that their child has Congenital Heart Disease, and at this time, there is currently no cure for this awful disease. Surgery, medications and heart transplants are merely a way to maintain. CHD is the biggest killer in children under the age of 1, 60 times more prevalent than paediatric cancer, but it is grossly underfunded.

The 20-week scan is so much more than the gender reveal. Not all forms of heart disease are discovered in pregnancy; many are discovered after birth. Around 85% of children with CHD are living into adulthood, thanks to medical advances. Advocacy and awareness is the most critical part of this journey, being a voice for these tiny humans who want the best chance at life and fight against all the odds.

Know what to ask at your scans, educate yourself, know basic resuscitation and CPR if it is ever needed and support those around you. Remember - a child, and even an adult, can look healthy and well but underneath their shirt is a scar that tells a mightly tale of a battle that they fight every day.

Thank you,

Jacinta, Darcy and Ollie x

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