A young family shared their experience of preparing for the death of their son, who was born with a serious and rare heart defect.
Skye and Chris Kennewell welcomed their son, Rocco, six weeks early in January after an emergency Caesarean section at Westmead Children’s Hospital in Sydney’s west.
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 that his wife and two sons, Arlo, five, and Zimi, three, had hoped Rocco would recover after undergoing several surgeries to strengthen his heart, but sadly, this was not the case.
Rocco successfully underwent his first surgery, but a sudden turn in the middle of the night required him to be on life support for four days and spend four months recovering in the Intensive Care Unit.
“We weren’t sure if we would lose it or not, but this is as close as we can get to that,” Kennewell said.
‘Little by little he has been recovering his health.
Rocco Kennewell (pictured) was born with hypoplastic right heart syndrome, a congenital heart defect.
Rocco’s family (pictured) have spent six months in hospital with Rocco, but doctors believe there is nothing more they can do to help his condition.
“We have been waiting for what should have been the second stage operation, but due to the high pulmonary pressures and occlusions in his arteries from the trauma, his anatomy no longer allows for it to be performed.”
The realization that nothing more could be done to help Rocco was a devastating blow to his family.
Now, your mission is to ensure that he fully enjoys the time he has left.
Rocco’s father, Chris Kennewell, hopes his family can return home to spend their final time together with Rocco (pictured, Rocco and his older brother, Arlo)
“We’re devastated, we feel like we’ve pushed him too hard and let him down,” Kennewell said. “We’re working very hard to get him home. He’s never been home, never seen his house, never been to the beach.”
‘It will be a while before the hospital can provide him with adequate care and find a local doctor willing to take him in.’
Rocco’s parents and siblings are grateful for the special six months they’ve already spent together and are excited to see his cheerful personality continue to shine through.
“She’s always smiling and happy. The lesson she’s taught me the most is that no matter how bad life is, you can always find joy,” Kennewell said. “She also loves music – Harry Styles, ABBA, Blondie. She loves being sung to.”
While Arlo and Zimi are probably too young to fully understand what’s going on with Rocco, Kennewell said they’ve been incredibly supportive of their little brother.
“My other children have been fantastic. They’ve been away from home, away from their friends, for over half a year and they haven’t complained or fussed at all,” she said.
‘My son is five years old and is very well connected with his emotions: he listens to everyone’s conversations and assimilates everything.
Rocco (pictured with his mother Skye Kennewell) underwent the first of three planned surgeries but will not be able to receive further treatment due to an adverse reaction.
Mr Kennewell described Rocco (pictured) as “always smiling and happy” and said: “The lesson he has taught me most is that no matter how bad life is, you can always find joy.”
‘I sat down with him and explained that there’s not much more they can do for Rocco and that we need to give him all our love while he’s still here.
‘Our daughter is almost three and probably can’t understand the gravity of this, but she loves Rocco so much that I swear she was born to be a big sister.’
A close friend of the Kennewell family has created a GoFundMe to help cover Rocco’s medical expenses and any ongoing costs.
“I have two other beautiful children in my care and I hope to raise some money to ease the financial burden. Chris is a hard-working father, but he shouldn’t have to leave his family on these precious days to earn money,” the fundraising campaign reads.
‘Rocco has come a long way and those of us who know him have come to love him and see his little personality, which makes this all that much more heartbreaking.
‘Despite everything they’ve been through as a family, Skye and Chris have maintained their positive and happy spirit as much as they can.’
Mr Kennewell hopes Rocco’s diagnosis can be used to raise awareness of childhood heart problems.
“Almost 50 per cent of all cases in Westmead’s Neonatal Intensive Care Unit and Paediatric Intensive Care Unit are related to congenital heart defects,” he said.
“There’s a one in a hundred chance that your baby will be born with heart disease. There’s not enough awareness about it.”
He also shared a thank you to the Ronald McDonald House in Westmead, where his family has been staying for the past six months while Rocco underwent treatment.
“They cook the most delicious and hearty meals and constantly organize activities for the children,” Kennewell said.
‘They’ve done mini carnival days here with all the vendors and food trucks, they have dance classes, cooking classes, they have a hairdresser that comes every week.
‘There is a nursery school where children can do normal school activities and play together.
‘They also organise days at the zoo or football for all the children who can get out.’
While 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 incredibly supportive.
Between 2,400 and 3,000 Australian babies are born each year with congenital heart defects, like Rocco (pictured with Ms Kennewell)
Hypoplastic right heart syndrome is a congenital disorder, meaning it develops before the baby is born.
Between 2,400 and 3,000 Australian babies are born each year with congenital heart defects, according to Children of the hearta Healthdirect partner.
Hypoplastic right heart syndrome specifically causes babies to have low oxygen levels because the heart cannot send enough blood to the lungs.
