New Blogger Heart Kid Mum Camilla & Jesse's story

Hi there! 

My name is Camilla and I am proud to be a guest blogger for HeartKids. I am a freelance copywriter and whilst I do have an endless amount of fun facts about me that I could list off, what you’re probably wondering is, how does this relate to HeartKids?


Well, *drum roll* this year my son Jesse was born with a previously undiagnosed Congenital Heart Defect and had open heart surgery at nine days old.


I’m sure some readers will relate to that feeling of finding out that your child has a congenital heart defect and even after the doctors explain everything, you still go on a mad googling session looking for hope. You want real life accounts from mothers in the same awful boat as you. The doctors explanations offer all the wisdom and expertise but you still want to know how do I cope? That’s where HeartKids come in. Hearing stories from people in different stages of their baby’s CHD journey and getting some support on navigating finances, where to stay and how to get through is an incredibly helpful resource.

Here is Jesse’s story*Spoiler: He is now a thriving 6 months old.*


In February this year I was in total bliss with my newborn baby: Endless cuddles, kisses and marvelling at the little thing you’ve created is just the best, right?


But at six days old, something went wrong. Jesse had a bad night of crying and wasn't interested in feeding. He’d had a check up earlier that day and it was all fine so we thought he must be okay but the next morning I woke up after a brief sleep to my partner telling me the words that no mother wants to hear. Something isn’t right


We called the Maternal Child Health helpline and after listing the symptoms - missing two feeds and breathing a little fast- she told us that we should take him in, if only to put our minds at rest. 


Shall we take an ambulance?” We asked but she said it was up to us, so we decided to get in an Uber with our brand new car seat. But en route to the hospital Jesse’s condition quickly deteriorated. I’ll never forget the pleading look on his face, the way his skin went blotchy and the helpless feeling of sitting in traffic knowing that we should have called an ambulance.


Arriving at The Royal Children’s Hospital was a blur. As we were taking him to the ER desk, a nurse rushed over to us, took him and called for help. Suddenly, we watched as a team of ten came from nowhere to respond to Jesse. He was taken away and an amazing social worker called Wade ushered us into a family room. He explained that they didn’t know what was wrong with him yet but that he was a very sick little boy. He reassured us that he would relay any updates.

Unfortunately, because Jesse was in such a bad condition when he came in, he was put on ECMO. Before they took him upstairs they told us to say goodbye and there was a real feeling that it could be our last moment with him.

I will quote an expert here on what ECMO is: 

Extracorporeal membrane oxygenation (ECMO) is a treatment that uses a pump to circulate blood through an artificial lung back into the bloodstream of a very ill baby. ECMO is used in infants who are sick due to breathing or heart problems. The purpose of ECMO is to provide enough oxygen to the baby while allowing time for the lungs and heart to rest or heal.’

Our world stopped and we sat in silence waiting for news and making a serious dent in the hospital’s tissue supplies from all the crying. Intrusive thoughts ran through our minds was it something I did? Why didn’t I take him in last night? 

After a long seven hours the Doctors told us that they thought it was either sepsis or a congenital heart defect. A few hours after that, it was confirmed: he had a congenital heart defect. Jesse had a coarctation of the aorta- a very narrow aorta that needed widening.

As an epilepsy sufferer, I was inconsolable. I couldn't help but ask the doctors was it my seizures during pregnancy? Did I start taking folic acid too late?

Thankfully, the wonderful team at The Royal Children’s were on hand with love and sympathy, reassuring us that we had done the right thing, we had brought him in and that it wasn’t our fault. The cardiac doctors explained that Jesse would need open heart surgery to fix his narrow aorta but they could only do that if his condition stabilized on the ECMO first.

And so, we moved into the Ronald McDonald house and took it in turns visiting Jesse on the Rosella ward for the next three days until he was given the all clear and taken into heart surgery. 

The day of the heart surgery felt like slow motion. My brother and sister happened to be visiting from interstate and the four of us did laps around the park and watched bad TV, hoping to distract ourselves. But after that excruciating six hours the surgeon called with the good news. The surgery had gone well and Jesse had survived the ordeal. A few days after surgery I got to hold him for the first time since he’d come to hospital and it was absolutely wonderful. He was still only two weeks old and he’d had open heart surgery. What a trooper!

The next two weeks went quickly as everyday there seemed to be progress. From starting on my milk through a tube to going back on the breast, every day felt like an achievement. I slept next to him and my goodness was he grizzly from the medication withdrawals! His vocal chords were damaged from the surgery and seeing him cry silently was heart wrenching. 


But, here I am, writing this blog post with a happy six months old cooing on my lap. This is just the start of Jesse’s journey and although it’s been a bumpy ride so far, I am optimistic about the future. Here’s to The Royal Children’s Hospital and HeartKids for their work 


Next Blog: 10 ways to get through the day when your baby has heart surgery