'What I wish I knew when my son was diagnosed with congenital heart disease.'

With my first child, I never made a pregnancy announcement on social media. I never shared ultrasound pictures or did a maternity photo shoot with tiny shoes. Even though my pregnancy was a surprise, my partner and I were excited, until we were scared. 

At our 20 week ultrasound, we found out our baby had congenital heart disease (CHD) and would need open heart surgery to have a chance at life. 

Six and a half years after that scan, my son is in year one. He has a wicked sense of humour, is an adventurous biker, and loves to understand how things work. He’s learning to read, he’s taking a hip hop class, and looking forward to Lego camp. Meeting him, you’d never know he had been a sick baby, kept alive by a feeding tube and an intense cocktail of medication. 

Watch: Jimmy Kimmel on his newborn son's heart disease. Post continues after video.

Video via Mamamia.

I wish I could go back to myself in those early days of pregnancy and pre-surgery and give myself a hug. Many days felt hopeless as we went to appointment after appointment, waiting for our baby to be strong enough for lifesaving surgery. With no guarantees, it was hard to imagine our family’s future. 


Here are some things I know now that I wish I’d known then.

1. Congenital heart disease is not uncommon.

It’s actually the most common birth defect in Australia with about 1 in 100 babies born with some form of it. As a result, there are experts in this field and well-equipped hospitals. Survival rates are high and there’s every reason to be optimistic. 

2. This baby will live.

He’ll not only survive but thrive. He’ll be smart, funny, rambunctious and downright rude sometimes. The tests and appointments seem endless but one day it’ll just be annual check-ups. This baby is going to make it.  


3. It’s NOT your fault.

Was it the glass of wine I had before I knew I was pregnant? Was it going on an airplane? Because I wasn’t immediately excited to be pregnant? Although these thoughts run through my head, research says the cause of CHD is still largely unknown. My doctors have told me repeatedly it’s not my fault and I believe them.

4. This child will drive you crazy.

He’ll refuse the meal you’ve just made, hit his sister, throw his shoes and push your buttons like you never thought possible. This child will do all the things healthy children do to drive their parents nuts.


5. You’ll still be scared.

Watching my son fall off his bike or run straight into a fence looking the other way can be terrifying. I clench my fists until he gets up and I wonder if his chest took any impact. I try not to overreact. I watch his lips to see if they’re turning blue, I check his chest as he wriggles away to keep playing. He’s fine but it takes me some time to recover from each tumble.

6. You’ll be brave enough to do it all again.

Getting pregnant a second time was terrifying. I still wasn’t confident enough to share a maternity announcement, but despite the struggles of round one, we wanted to give our heart baby a sister to torture. She was born without CHD.

Image: Supplied.


7. CHD is just one chapter.

Surviving heart surgery used to be my son’s story. But as he gets older, goes to school, and develops interests, we talk less about his surgery. Friends don’t ask about his health and it isn’t top of mind. His accomplishments have become less about his heart condition and more aligned with his interests and who he’s choosing to become. 

8. He’s growing up strong.

My son is proud of his story. He knows his past, sees pictures of himself with a feeding tube, and keeps going. He is an example of CHD not slowing kids down. He’s a zipper-kid (nickname for the chest scar) and he’s living life to the fullest. 

Every time we’re in the heart clinic waiting room, I see sick babies and new parents with scared eyes. I want to tell them it’ll be okay. I wish I could reassure them and let them see what a full life my son is living, that we all are living. I want those parents to know that the trauma is real and the fear is palpable but there is joy waiting on the other side of heart surgery.

Feature Image: Supplied.

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