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Cassia's Journey

We didn't know that Cassia had a heart condition until hours after she was born, she looked well but she was very unwell. Everyone in the room was shocked as her vital statistics were not good and her oxygen levels were extremely low.  

Dr Savery gave Cassia oxygen expecting her levels to increase but they didn't improve, so he suspected there was an issue with her heart. Luckily Dr Andrew Savery had been part of the transport team in the past and had the foresight to stop giving her oxygen as this could have sped up the closure of the ductus arteriosus which was what was keeping her alive.

Cassia was rushed to Princess Margaret Hospital (PMH) for more tests and confirmed there was an issue with her heart. Cassia was born with Complete Transposition of the Great Arteries (TGA).

I was in a private maternity hospital and given birth via Caesarean section so I wasn’t fit enough to go to the hospital so her Father, Scott went with her. Cassia underwent emergency surgery to mix oxygenated blood with her non-oxygenated blood. She also received a drug to keep the ductus arteriosus open to enable the blood to mix.   This drug has the side effect of causing Apnea Cassia was adversely affected by the drug and she flatlined a few times that first night. 

Cassia was intensely monitored at PMH for 5 days while the hospital arranged for her surgery. The arterial switch surgery was not available in Western Australia at this time (2009) so arrangements needed to be made to transport Cassia to another state.

Cassia was transported via ambulance and then a commercial Qantas plane to Brisbane and was accompanied by her own doctor and nurse, along with myself and her dad.  Qantas removed 12 seats from the plane so that they could insert her own special humidicrib.  Her sister Violet,  stayed in Perth with her Grandma until after the operation.

The next 4 days were spent at Mater Children’s hospital where Cassia was monitored and cared for to make sure she was ready for her surgery.  It was at this time I was first introduced to HeartKids.

There was a special room in the cardiac unit for parents and carers where support from Heartkids was available.  The support was amazing.  I was so confused and exhausted but there were representatives I could talk to that could help explain what was happening.  I hadn't done any research as we didn't know Cassia had a heart condition and Heartkids supplied me with all the important factual information and also with great ongoing support.

I stayed at the hospital all day and night with Cassia. As a result, I often missed meals and sleep times.  HeartKids provided supplies and meals in the freezer, information booklets as well as toys and games for siblings.  They even supplied superior chairs that folded out into actual beds for the time I could squeeze in a nap.

As I didn't know there was going to be a problem with Cassia’s heart, and just having had a cesarean birth and traveling 3,000 kms across Australia,  everything was extremely overwhelming. The fantastic support and help given to me by HeartKids was invaluable.

On day 9, Cassia had an arterial switch operation. The day was very long and the Heart kids representative had given us some great advice on how to deal with the day.  After 10 hours we were told Cassia's surgery was successful, but that due to excessive swelling her chest had been left open with a thin surgical see-through sleeve over her heart to allow for the swelling to subside. During this time Cassia had a surge of sudden movements on the left side of her body which lasted only for a few minutes. It was later discovered that she had had a seizure, similar to a stroke, on her right frontal lobe, and also suffered extensive bleeding within the brain area of the thalamus, during the hours she spent on a heart and lung machine during surgery.  This apparently is a common occurrence for those that spend an extended time on a heart and lung machine.

Cassia’s wound was eventually sewn up with titanium stitches to the sternum and we then spent another few days in the ward. It was not known at this time the effects of the bleed on the brain and the seizure and whether Cassia’s mobility would be affected and if she would be able to walk or talk, but we were advised to treat cassia as any other baby and child . The single limitation was to not lift Cassia’s arms above her head at all for some time in the future whilst she was healing. Two weeks later we were back in Western Australia and her recovery was slow, and she was definitely uncomfortable for quite some time and she was very vocal about it. Cassia had an MRI at 6 weeks to check on the damage to her brain and to our relief everything seemed to be functioning as normal and she was progressing relatively normally.  It was just 6 months later that she started to crawl and sing to herself.

Cassia started music at 2 and dancing at 3 and at nearly 13 she is now at John Curtin College of Performing Arts in the sought-after Music Theatre program. From very early on in her life Cassia has always been drawn to Music and is a joy to listen to and watch when she performs. Cassia was always surrounded by music and since she met her now stepfather Kav, Cassia has been writing songs.

Everyone in Cassia’s family supports any cause that brings awareness to congenital heart disease in children, and I look forward to Cassia spending more time with the Heart kids teens in the future.

12 October 2022
Category: News