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Mikey's Story

“Do you know what congenital heart disease is? I didn’t until I was told my son had it.  It turned our lives upside down.

Meet our Mikey, born 7 June 2016. He is in palliative care and we have been told he is unlikely to live past another four weeks.

Why is it that a disease so common and the number one killer of children under one, is rarely spoken about? And why is there little known about it? I often wonder if it’s because these kids don’t look sick...

We lived and breathed the cardiac community at the Royal Children’s hospital for almost four months and unbelievably over 50% of the Children’s Intensive Care Unit is occupied by our CHD kids.  Again why is it not spoken about?

When I was 16 weeks pregnant, my son was diagnosed with a single ventricle cardiac issue.  We were offered the option of termination but were also told that with approximately three open heart surgeries at different stages, Mikey had a good chance at living a happy and good quality of life.  We did a lot of other tests and his results showed that he didn’t have any chromosome illnesses and appeared physically and mentally well… he just had a dodgy heart.  

Looking back now, I had no idea how traumatic the world of CHD was and that we were about to be thrown straight into.  I do not regret having Mikey because he had a chance and we have fought so hard for it, but the things we have seen in this community are just overwhelming. So many children fighting so hard and amazing surgeons operating against all the odds! There are also many children waiting for transplants. Some get lucky and are given a new heart... when you hear the laughter of a child in the ward post-transplant, it makes the hard days worth it.

Once Mikey was born he arrived looking like a perfectly happy healthy little boy.

But we knew he had to be transported within hours to the Royal Children’s Hospital so they could see how bad his heart really was.  The news was terrible, we discovered that on top of his initial diagnosis, he also had TAPVD – Total Anomalous Pulmonary Venous Drainage. Mikey’s pulmonary veins, which carry blood back to the heart after it has circulated through the lungs, were not connected to the left atrium. Instead they’re connected to a vein which causes blood to drain into the right side of his heart. 

This meant he was having his first open heart surgery within 36 hours of birth.  We got to hold him the morning of his surgery and were told he only had a 50/50 chance of survival.

Needless to say the eight hours of waiting were awful! It felt like we were the only two people going through this. Little did we know that there are so many other parents in Australia going through this every day.

Mikey’s surgery was a success! His surgeons were like magicians. But he still had a fight on his hands.

After ten days in ICU we were allowed to hold our son again… and oh it felt good, we began to call him our little Lion man, so brave and so strong.

Another nine days passed and Mikey had a second open heart surgery to put a shunt in. The operation was a success and I looked at Mikey’s surgeons as rock stars.  We did it... Our Lion man was such a fighter, we were so proud of him and we were allowed to take him home until the next surgery.

For eighteen wonderful days we played happy families at home and thought we were on track to having a good life with our little boy.  No tubes, no assistance, just us and our five week old baby.

I felt so blessed. We were so comfortable and I went into first-time mum mode. I enjoyed having him lay next to me in our home and not in a hospital and I didn’t even care that I was sleep deprived! After a couple of weeks Mikey got a cold and was struggling to keep his feeds down, so we took him to the hospital and they admitted him as a precaution. He was taken for some detailed scans which showed a narrowing in his pulmonary veins. It was the worst news because it made him inoperable for his future surgeries, which he absolutely needed in order to survive.

His case was taken to a meeting between the cardiologists and surgeons. An amazing surgeon spoke up and offered us an option – the only option. The surgery he suggested had minimal success rate but he believed Mikey was owed a final chance. While the surgery was a success, we had to wait weeks for his results to see if the operation had actually worked or if his veins continued to narrow.

About six weeks later we found out it hadn’t worked. There was nothing else that could be done for Mikey, except to make him comfortable. They gave him a few months at most.

The news broke us, our little boy Mikey who was so full of life and just starting to show his personality, was out of options.  If more was understood about CHD there may be more options for families like ours... but there isn’t.  All we can do now is make memories while we still can.

We have brought Mikey home and are enjoying every moment we have with him.  I would love everyone to meet him and put a face to CHD, because he looks so well! We need more awareness about this disease, more funding to understand the causes and more amazing surgeons like Mikey’s in order to give these kids every chance possible...

I urge you to be aware of this silent and biggest killer of babies in Australia and to strongly consider the importance of organ donation.  Please.” – Melissa. 

Mikey passed away in his mother’s arms on October 25, 2016. Rest In Peace Mikey.

Learn more about CHD

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