Meet Levi!

In 2019 at their 20-week scan, Levi’s family had their world turned upside down when they found out their little bub had congenital heart disease.

Born at Monash Health at 38 weeks, little Levi was then transferred to the Royal Children’s Hospital for a life-saving major open heart surgery at just 9 days old to repair his aortic arch.

Levi had many post-op complications and he spent a total of 8 weeks and 6 days in the PICU rosella where he was also placed on ECMO just an hour after coming out of surgery to give his little heart a rest.

Levi has many left-sided heart defects he has (shones spectrum) hypoplastic aortic arch, a small left ventricle, bicuspid aortic valve, a small mitral valve, pulmonary hypertension, coarctation of the aorta, and an ASD. At 7 weeks into PICU, they tried to extubate Levi but he failed and was reinutabted as they discovered he also was born with floppy airways.

Levi had to come home with a feeding tube, and on a breathing machine with hi-flow on room air where he was only allowed to have 3 hours off per day. Towards the end, Levi was transferred back to Monash children’s to be closer to home, in total Levi spent 105 days in the hospital before he ever got to come home.

“It was a traumatic experience seeing your child so lifeless, but the staff at RCH were accommodating and became like our own family. They deeply cared for our son just like he was their own.” His mum Kayla noted.

In February 2020, Levi was sent back to the Royal Children’s Hospital where he had to undergo cardiac Cath lab surgery to balloon his aortic arch as it had narrowed again which was a success.

“Levi will always remain with congenital heart disease for the rest of his life, he will need to battle this and we are so grateful to have a wonderful hospital like rch to take care of him. Without the amazing surgeons, doctors and nurses Levi wouldn’t still be here with us today, we owe them our lives! It was a very rough and hard time but the staff helped us get through it.” Kayla said.

“We nearly lost Levi a few times we are so grateful and forever thankful to still have him here with us today his now 2 and half years old and is doing very well”