There are certain things in life that one can’t prepare for, such as the moment a parent is told their newborn has been diagnosed with congenital heart disease.

Suddenly a momentous occasion quickly turns to sadness and things change in a heartbeat. Read on to learn more about just one families Heartkid journey.

Congenital heart disease is one of the leading causes of death of Australian babies under one and one of the most common birth abnormalities, affecting one in every 100 births. Every day, eight babies are born with congenital heart disease and sadly, four lives are lost each week. There is no known cure. Congenital heart disease is a complex chronic disease requiring lifelong treatment.

February 14 is HeartKids Sweetheart Day, a national event held each year to raise awareness of congenital heart disease (CHD), which affects eight babies born in Australia every day (that’s one every three hours). Four precious lives are lost each week, making this complex condition with no known cure, one of the leading causes of infant death in the country.

I never thought it would happen to me!

As told by Mamamag Digital Content Manager, Tracy Hardy.

Our first born son was diagnosed with a Congenital heart disease called – transposition of the greater arteries a few hours after he was born.

I never once considered asking the sonographer if they had checked my son’s heart closely when we had our 20 week scan. I was a first time mum-to-be, excited and nervous about finding out whether it was a boy or girl, not giving my baby’s heart health a second thought. I trusted that the major organs were being checked closely, and believed them when they said my baby was healthy.

Imagine the shock when we found out six hours after our son’s birth that something was drastically wrong.

The birth

I was induced a few days early due to concerns I had increased BP.

My OB broke my waters around 9am, I was then put on the drip around 11am and labour slowly progressed.

Our first son was FINALLY born at 6:09pm that day and we were elated!!

All was going well (or so we thought!!)

Although he wouldn’t settle for me and I had noticed he kept gasping for breath, but every time I said to the midwife he can’t breath she reassured me it was normal and he would have a bit of mucus on his lungs from the birth etc.

Around midnight the midwife finally convinced me to let them take him to the nursery for a while so I could get some rest. I reluctantly agreed. (looking back I’m glad I did give in)

About an hour later the Paediatrician was knocking on our door telling us that something was wrong with our son, of course I thought straight away it’s his lungs because he was breathing funny, she said “NO IT’S HIS HEART!! ” I was like WTF NOOOO it’s his lungs!! Yep. I actually argued with her.

She took us into the nursery where we found our gorgeous little boy attached to oxygen and nurses rushing around everywhere getting organised to move him to the PICU ward so he could have an ECO cardiogram to confirm his heart problem!

HOLY CRAP in a matter of minutes our world had crumbled.

The diagnosis

Cut to the chase… His heart problem was confirmed, “Transposition of the Greater Arteries with ASD and VSD” basically the two main arteries were crossed and the blood wasn’t flowing correctly which meant he wasn’t getting any oxygen into his blood. He also had two holes in the heart.

We were flown to Melbourne (from Tasmania) the day after our baby boy was born, where we spent the first three weeks of our newborn baby’s life, anxiously waiting to hear he was going to be OK.

I sat on the plane and sobbed. People must have thought I was crazy. I still had my hospital tag attached. I looked like I had escaped from a mental ward.

I had just become a new mum and this was NOT meant to be how things happened. Nobody had warned me that things can go wrong. Why wasn’t THIS discussed at one of my many midwife appointments?

When he was less than 24 hours old he had his first procedure, a septostomy, to improve the blood flow while we waited for his major surgery. They needed him to grow a bit before performing his open heart surgery. The heart is the size of your fist so you can imagine how tiny the heart is of a 7 lb 1 oz newborn.

Finally, when he was eight days old, he was ready for his lifesaving surgery. It was the 18th March 2004. I wasn’t brave. I refused to hand my tiny baby boy over to the surgeons. Instead, I stayed in bed and sobbed. I regret that now, but at the time I just didn’t have the strength to fight the emotion.

He was on heart bypass for eight hours while they performed the arterial switch operation. It was the longest eight hours of my life.

We have hit a few bumps over the years, but thankfully we are one of the lucky families with a successful outcome. Our son will be 19 years old this year and his condition (although never cured) has never held him back from pursuing what he wants in life.

This sentence jumped out at me one night….

“Childhood heart disease is no fault of the parents or the child. It is simply a result of the cruel hand of fate.”

It is hard to accept that reasoning though, it MUST have been something I did or didn’t do, why else would it happen?

Children with childhood heart disease will face unique challenges for the rest of their lives and for many, this will include ongoing medical treatment and repeated heart surgeries.

Thankfully there are more people over the age of 16 with CHD than younger. This is due to medical advances. In days gone by they were the ‘blue babies’, most of whom died at birth. Thank goodness for medical advances!

Sadly, many families don’t have a happy ending to their story. Picking up a heart defect early could increase the chances of survival for some babies.

Our Heartkid (although not a kid anymore) will always be my hero! They are the toughest and strongest people you will ever meet.

The impact is huge!

Despite being a serious life-threatening condition, over 65,000 Australian babies, children and adults are currently living with CHD, yet they will face unique challenges for the rest of their lives, including repeated heart surgeries and ongoing medical treatment. The impact of having a heart child is life-changing for the entire family and one that leads to enormous emotional and financial stress. With CHD impacting one in every 100 births, a further 3,000 babies are expected to be born with CHD in 2022.

Did you know these famous people all suffer from congenital heart disease:

• Miley Cyrus, singer and actress – Tachycardia
• Shaun White, snowboarding Olympic gold medallist – Tetralogy of Fallot
• Jessie J, singer – Wolff-Parkinson-White Syndrome
• Jimmy Barnes

Also these famous parents all have children diagnosed with congenital heart disease:

• Jimmy Kimmel, Late Night host, son with Tetralogy of Fallot with Pulmonary Artesia
• Sylvester Stallone, actor, daughter with Ventricular Septal Defect
• Katherine Heigl, actress
• Simon Reeve, Channel Seven Weekend Sunrise presenter
• Ashton Kutcher’s twin brother was born with CHD and has had a heart transplant

How you can help

HeartKids is Australia’s only national charity dedicated to supporting those impacted by CHD and is a critical lifeline for thousands of Australian families.  The purchase of a Valentine’s Day card will help HeartKids continue its essential support services and programs while providing vital funds for ongoing research.

How to participate in ‘Sweetheart Day’ in February:

  • Donate or purchase a bracelet or Valentine Day card from fundraising stalls and online. All proceeds go directly to helping HeartKids support children affected by congenital heart disease and their families
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