Fixing Ruby’s heart

Ruby is the bright, bubbly toddler she is today thanks to the teams across the Heart Centre for Children who helped fix her heart.

At nineteen weeks pregnant, Ruby’s mum, Tiina, was told there was something wrong with her baby’s heart and she would need to be referred to the Heart Centre for Children for further prenatal care.

The Heart Centre for Children is a service of Sydney Children’s Hospitals Network, caring for more than 5,000 babies and children with congenital heart defects across Sydney Children’s Hospital, Randwick (SCH) and The Children’s Hospital at Westmead (CHW) each year.

It was here Tiina was introduced to the specialist cardiac team at SCH and where it was confirmed Ruby had congenital heart disease.

“I had a gut feeling something wasn’t right but hearing the doctors say it out loud made my fears a reality,” Tiina said.

Using fetal echocardiography, doctors diagnosed Ruby with Truncus Arteriosus Type 1, a defect caused when the blood vessel coming out of the heart doesn’t separate completely during development, and a Ventricular Septal Defect (VSD), a hole in the heart.

It was a scary time for Tiina but her cardiologist, Dr Alex Gooi, assured her they could perform a total correction once Ruby was born and that she would be a great candidate for a successful surgery. “He assured us that Ruby would have a great outlook for the rest of her life”.

“He was amazing and explained everything to us in detail and in a way that was easy for us to understand,” Tiina said.

“Ruby was very much planned, wanted and already loved and we wanted to turn every stone to be able to continue with the pregnancy.”

“Receiving a diagnosis like this can be very scary but that reassurance that everything was going to be ok gave us hope. We trusted the medical advice and also had lots of confidence in ourselves that maybe this experience would make us stronger as a family,” Tiina said.

Ruby arrived just before Christmas and her family were able to celebrate Christmas and New Year at home with their new bundle of joy. Shortly after New Year, Tiina noticed Ruby was breathing rapidly and rushed her to their local emergency department.

 

“Mother’s instinct kicked in and glad it did, as she was starting to decline, however the changes were subtle.” Tiina said.

Given her medical history, Ruby was fast-tracked from her local hospital to The Children’s Hospital at Westmead, where the Heart Centre for Children team prepared her for surgery.

Although things hadn’t gone as planned, Tiina knew Ruby was now in the best possible hands. “It was actually a relief to hand her over on the morning of her surgery, as I knew I could not help her anymore,” Tiina said.

“Having formed such a strong relationship with our cardiologist before Ruby was born and having met her cardiothoracic surgeon, Dr Yishay Orr, and the broader cardiothoracic team prior, really helped give us the confidence, keep me calm and comforted during Ruby’s surgery,” Tiina said.

The surgery was a success and after five days in the Paediatric Intensive Care Unit and only eight days on the ward recovering, Ruby was able to return home to her family.

 

“We took each day hour by hour but she healed very well. It was quite astounding how quickly and how well she was able to recover,” Tiina said.

Since her surgery, Ruby has continued to visit the Heart Centre for Children at SCH for follow up care and routine checkups, with her heart receiving glowing reviews.

Ruby, who was named by her big sister, is a clever, happy and cheeky toddler and is kicking goals. She spends most of her time chasing, annoying and copying her big sister, you wouldn’t know the rough start she had for life.

“We feel so fortunate for the incredible support we received from the cardiology teams and nurses across both hospitals, it definitely is a great system!” Tiina said.

“Not only did they make a scary experience bearable for us, more importantly they saved our little girl’s life and for that, we will be forever grateful.”