A young family shares their experiences preparing for the death of their son, who was born with a serious, rare heart defect.
Skye and Chris Kennewell welcomed their son Rocco six weeks earlier in January, following an emergency caesarean section at Westmead Children’s Hospital in western Sydney.
Six months later, the Kennewells are still in the hospital.
Rocco was born with Hypoplastic Right Heart Syndrome, which means the structures on the right side of his heart are underdeveloped.
Mr Kennewell told Daily Mail Australia his wife and their two children, five-year-old Arlo and three-year-old Zimi, had hoped Rocco would recover after undergoing several operations to strengthen his heart, but sadly this was not the case.
Rocco underwent his first surgery successfully, but a sudden turn of events in the middle of the night left him on a ventilator for four days and spent four months in intensive care recovering.
“We weren’t sure at the time if we were going to lose him, but this is as close as you can get,” Kennewell said.
‘He has slowly gotten better again.
Rocco Kennewell (pictured) was born with Hypoplastic Right Heart Syndrome, a congenital heart defect
Rocco’s family (pictured) spent six months in hospital with Rocco, but doctors believe there is nothing more they can do to improve his condition.
“We waited for what should have been the second surgery, but because of the high pressure in his lungs and blockages in his arteries from the trauma, his anatomy no longer allows for this.”
The realization that nothing more could be done to help Rocco was a huge blow to his family.
Now their mission is to ensure he makes the most of the time he has left.
Rocco’s father, Chris Kennewell, hopes his family can go home and spend Rocco’s last bit of time together (pictured are Rocco and his big brother, Arlo)
“We’re devastated, we feel like we’ve put him through so much and let him down,” Mr Kennewell said. “We’re working hard to get him home. He’s never been home, never seen his house, never been to the beach.”
‘It will take some time before the hospital can arrange the right care and find a local doctor who is willing to treat him.’
Both Rocco’s parents and siblings are grateful for the special six months they have already spent together and look forward to seeing his vibrant personality shine even further.
“He’s always happy and cheerful. The lesson he’s taught me the most is that no matter how bad life gets, you can always find joy,” Mr. Kennewell said. “He also loves music — Harry Styles, ABBA, Blondie! He loves to be sung to.”
Although Arlo and Zimi are likely too young to fully understand what’s going on with Rocco, Mr Kennewell said they’ve been a tremendous support for their little brother.
“My other kids are great. They’ve been away from home, away from their friends, for over half a year and they haven’t complained or complained at all,” he said.
‘My son is five and he is very good at dealing with his emotions. He hears other people’s conversations and absorbs everything.
Rocco (pictured with his mother, Skye Kennewell) underwent the first of three planned surgeries, but is unable to undergo further treatment due to a side effect
Mr Kennewell described Rocco (pictured) as ‘always smiling and happy’ and noted: ‘The lesson he taught me the most is that no matter how bad life gets, you can always find joy’
‘I sat down with him and explained to him that there is not much more they can do for Rocco and that we need to give him all our love while he is still here.
“Our daughter is almost three and probably can’t imagine the severity of the problem yet, but she loves Rocco so much that I swear she was born to be a big sister.”
A good friend of the Kennewell family has a GoFundMe to cover Rocco’s medical expenses and any ongoing costs.
“With two other beautiful children to care for, I am hoping to raise some money to help ease the financial burden. Chris is a hardworking father but should not have to leave his family in these precious days to earn money,” the fundraiser reads.
‘Rocco has come a long way and those who know him have grown to love him and know his personality, which makes this all the more heartbreaking.
‘Despite everything they have been through as a family, Skye and Chris have maintained their positive and cheerful spirit as much as possible.’
Mr Kennewell hopes Rocco’s diagnosis can be used to raise awareness of heart problems in infants.
‘Almost 50 per cent of all cases in the Neonatal Intensive Care Unit and Paediatric Intensive Care Unit at Westmead involve congenital heart defects,’ he said.
‘The chance that your baby will be born with a heart defect is one in a hundred. There is not enough awareness.’
He also expressed his thanks to the Ronald McDonald House in Westmead, where his family has been staying for the past six months while Rocco was receiving treatment.
“They cook the most fantastic, hearty meals and are constantly organising activities for the children,” Mr Kennewell said.
‘They’ve had mini carnival days here with all the vendors and food trucks, they have dance classes, cooking classes, they have a hairdresser who comes every week
‘There is a playgroup where the children can do normal school activities and play together.
‘They also organize days out to the zoo or soccer games for kids who have the opportunity to go outside.’
Although Arlo and Zimi (pictured with Rocco and Mr. Kennewell) are probably too young to understand what is happening to their brother, Mr. Kennewell said they have been a tremendous support
Each year in Australia, between 2,400 and 3,000 babies are born with congenital heart defects, like Rocco (pictured with Mrs Kennewell)
Hypoplastic right heart syndrome is a congenital defect, meaning it develops before a baby is born.
According to a study by the Australian government, between 2,400 and 3,000 babies are born with congenital heart defects each year. Heart childrena partner of Healthdirect.
Hypoplastic right heart syndrome causes babies to have low oxygen levels because the heart cannot pump enough blood to the lungs.