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A five-year-old Queensland boy with Down Syndrome has defied all odds after being born with multiple life-threatening heart issues, leaving his parents Julia and Luke in awe of his fighting spirit.
During National Heart Week (1-7 May), Julia described her son as a “warrior” who had spent much of his life in hospital.
Little Grayson was born at Mater Mothers’ Hospital in July 2018 and spent two weeks in the Neonatal Intensive Care Unit (NICU) with a world-leading team of doctors, nurses, midwives and allied health clinicians providing around-the-clock care.
Julia, from Aspley, was told by doctors at her 20-week pregnancy scan that Grayson had T21, also known as Down Syndrome, which contributed to several issues which also affected his developing tiny heart.
Given the “heart breaking” option to terminate her son due to his complicated conditions, Julia was determined to give her unborn son a chance at survival.
Having developed congenital heart disease, a condition in which there is a large hole connecting all his chambers of the heart and the valve guarding the blood flow from the collecting to pumping chamber of his heart. He also had Tetralogy of Fallot which affected the way in which blood flowed to his lungs from the heart causing Grayson to go blue, also known as ‘Blue baby’.
To add to his list of medical complexities, Grayson also has hypothyroidism, Gastro oesophageal reflux and floppy airways.
After being born at 37 weeks gestation via an emergency caesarean section at Mater Mothers’ Hospital, the blond-haired blue-eyed boy was home for just five weeks before going into heart failure.
It was the medical team, led by Queensland Children’s Hospital Director of Cardiac Surgery Dr Prem Venugopal, who saved Grayson’s life.
Dr Venugopal performed heart surgery on Grayson at just eight weeks old, increasing blood flow to his lungs using a shunt. Grayson also underwent a 10-hour curative open-heart operation involving ten specialist clinicians just before his first birthday.
Mater Director of Neonatology Dr Pita Birch said 125 babies were admitted to Mater Mother’s NICU with a primary cardiac diagnosis last year. Most cases involved congenital heart disease.
“More than 100 babies are admitted to Mater every year with congenital heart disease,” Dr Birch said.
“The management of these babies requires a lot of multidisciplinary teamwork including the Mater Centre for Maternal Fetal Medicine service, the neonatal medical, nursing and allied health team, radiology, pathology, the cardiology medical and nursing team, the cardiac surgeons and the paediatric intensive care team.”
Julia said despite Grayson’s medical challenges, he has given his family, including big sister Eliette, a lot of joy and happiness.
“He came home with a nasal gastric tube after his first operation and that was our way of life for 18 months,” she said.
“One week before his first birthday Grayson had his big open-heart surgery. His recovery in the Intensive Care Unit wasn’t great and he went downhill quickly, and we nearly lost him.
“Grayson still has more heart surgeries in the future. Our next big one is to replace his pulmonary valve, but we are hopeful if we can get him big enough that it can be done through a catheter procedure rather than another open-heart surgery.”
Dr Venugopal said treatment for babies born with complex cardiac conditions like Grayson have significantly advanced in recent years.
He estimated he operated on only one child a year with T21 and this combination of multiple heart defects.
“Thirty years ago, children born with T21 and heart conditions were not offered any surgical procedures. Doctors in the 80s would say they wouldn’t waste their time operating on ‘these kids’,” Dr Venugopal said.
“Things have completely changed now. The fact these children have T21 means they still get the same treatment as any other child, they just come with their own unique set of challenges during and after surgery.”
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