The transformation that helped save Charlie

At 32-weeks, expecting-mum Mackenzie took the offer for an optional ultrasound to see how her little boy was growing. All seemed well until that afternoon, when Mackenzie received a phone call from her doctors telling her there was something unusual in her baby’s belly.

Over the next week, Mackenzie had more ultrasounds to find the cause, where it was discovered there was a growth in baby Charlie’s, tummy. Mackenzie and her partner, Jason, were told their little boy would need specialist care as soon as he was born.

With this news, the couple from Mudgee, packed their bags and drove to Sydney – not knowing what the future held or when they would return.

In Sydney, an MRI scan confirmed Charlie had a massive 10 cm mass in his liver, which was almost about the size of a rock melon.

A few days later, Charlie was born at Westmead Hospital via an emergency caesarean and was immediately transferred to the Grace Centre for Newborn Intensive Care at The Children’s Hospital at Westmead (CHW).

“It was a rough start to Charlie’s life but we’ve never been left in the dark since diagnosis. As soon as we got to Westmead, we were introduced to all the people who were going to take care of Charlie when he came out, and we are so grateful,” Mackenzie said.

For his first week, Charlie was unable to lie on his back as the weight of the mass, which occupied almost his entire liver, would obstruct the blood coming back from his lower body much like in a term pregnancy.

His clinical team hoped the unusually large legion (called a hemangioma) would gradually reduce in size, but after a week, Charlie was only getting sicker and the mass was growing even bigger.

The only solution for this was to try to reduce the size of the mass either by surgery or by cutting off its blood supply using interventional radiology techniques. Both were risky ventures as the mass was in the centre of the liver and was in a very awkward position.  

Fortunately, the Interventional Radiology Suite funded by the Sargents Pies Charitable Foundation through Sydney Children's Hospitals Foundation gave Charlie hope.  

In a remarkably precise and skilled intervention, Interventional Radiologists Dr David Lord, Dr Murthy Chennapragada and their team were able to block off 85 per cent of the blood supply to the mass, stopping it from growing further. Unfortunately almost as soon as this was achieved, Charlie’s belly distended so significantly that the anaesthetists were finding it difficult to ventilate him and he was in grave danger.

Incredibly, almost immediately, the suite was transformed into an operating theatre where paediatric transplant surgeon, Dr Gordon Thomas, performed an emergency laparotomy (abdominal surgery) to stop the bleeding and to improve his breathing and ventilation. This procedure was life-saving and only possible thanks to the combination of multiple teams at hand and the availability of such advanced technology.

 “We were able to do this amazing, and difficult procedure to save Charlie’s life because we worked so closely together as multi-disciplinary teams”  Dr Thomas said

 “Charlie improved once we opened his belly. We had to keep it open  for several weeks as we took him back to theatre multiple times to reduce the tumour’s size.”

Following several surgeries to slowly reduce the size of the mass, his surgeons were able to close his belly. Fortunately, the tumour has since shown no signs of growth.

A biopsy helped doctors determine Charlie had an unusually large congenital haemangioma, a rare and benign vascular tumour that is already developed at birth.

 “It was next level what they did. Thanks to the incredible work by the team and technology in this suite, we’ve been able to take our son home, which is the best thing ever,” Jason said.

Mackenzie and Jason took their son home for the first time in May and while he is still recovering, there’s promising signs ahead.

 “I’ve seen him in the clinic and he looks fabulous. He’s done very well. It’s a miracle and an amazing result,” Dr Thomas said.

“We are so pleased that this little baby from the country can have access to world class care like this and have such a good result”.

Mackenzie and Jason are thankful for the care Charlie received at the Hospital, and are thrilled to see him thriving back home in Mudgee.

“I don’t think Charlie would be where he is today without all the technology and specialists that they have here at Westmead,” Mackenzie said.

“We have been in one of the best hospitals in NSW.”

 Picture credit: Robert Halliday