A young family has shared their experience of preparing for the death of their baby son, who was born with a severe and rare heart defect.
Skye and Chris Kennewell welcomed their son, Rocco, six weeks early in January after an emergency C-section at Westmead Children’s Hospital in Sydney‘s west.
Six months later, the Kennewells are still at 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 their two children, five-year-old Arlo and three-year-old Zimi, were hopeful Rocco would recover after undergoing several surgeries to strengthen his heart, but sadly, this wasn’t the case.
Rocco successfully underwent his first surgery, but a sudden turn in the middle of the night required him to rely on life support for four days and spend four months recovering in the Intensive Care Unit.
‘We weren’t sure if we would lose him then or not, but it’s as close as you can come,’ Mr Kennewell said.
‘He has slowly clawed his way back to 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 high pulmonary pressures and occlusions in his arteries from trauma, his anatomy no longer allows for the it to be done.’
The realisation nothing more could be done to help Rocco was a crushing blow for his family.
Now, they’ve made it their mission to ensure he fully enjoys the time he has left.
Rocco’s father, Chris Kennewell, hopes his family will be able to go home to spend the last of Rocco’s time together (pictured, Rocco and his big brother, Arlo)
‘We are devastated, we feel like we have pushed him through so much and failed him,’ Mr Kennewell said. ‘We are working really hard to get him home. He has never been home, seen his house, or been to the beach.’
‘It will take a little while for the hospital to sort out proper care and find a local doctor willing to take him on.’
Both Rocco’s parents and siblings are grateful for the special six months they’ve already spent together and are excited to see his bubbly personality continue to shine through.
‘He is always smiling and happy. The one lesson he has taught me the most is no matter how bad life gets, you can always find joy,’ Mr. Kennewell said. ‘He also loves music — Harry Styles, ABBA, Blondie! He loves being sung to.’
While Arlo and Zimi are likely too young to fully understand what’s happening with Rocco, Mr Kennewell said they’ve been an amazing support for their little brother.
‘My other kids have been awesome. They’re out of home away from their friends for over half a year and they haven’t whinged or complained at all,’ he said.
‘My son is five and is very well connected with his emotions – he hears everyone’s conversations and takes it all in.
Rocco (pictured with his mum, Skye Kennewell) underwent the first of three planned surgeries but won’t be able to undergo further treatment due to an adverse reaction
Mr Kennewell described Rocco (pictured) as ‘always smiling and happy’, noting: ‘The one lesson he has taught me the most is no matter how bad life gets you can always find joy’
‘I have sat down with him and explained that there isn’t much more they can do for Rocco and we have to give him all our love while he is still here.
‘Our daughter is almost three and probably not able to grasp the gravity of it but she loves Rocco so much, I swear she was born to be a big sister.’
A close friend of the Kennewell family have created a GoFundMe to help cover Rocco’s medical fees and any ongoing costs.
‘With two other beautiful children to look after, I’m hoping to raise some money to ease the financial burden. Chris is a hard working dad but shouldn’t have to leave his family in these precious days to earn money,’ the fundraiser reads.
‘Rocco has come a long way and those of us that know him have grown to love him and see his little personality which makes this all so 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 bring more awareness to infant heart problems.
‘Almost 50 percent of all Neonatal Intensive Care Unit and Pediatric Intensive Care Unit cases at Westmead are to do with congenital heart defects,’ he said.
‘It is a one in 100 chance your baby will be born with a heart condition. There isn’t enough awareness.’
He also shared a thank-you to the Ronald McDonald House Westmead, where his family has stayed for the last six months while Rocco underwent treatment.
‘They cook the most amazing hearty meals and they are constantly putting on activities for the kids,’ Mr Kennewell said.
‘They have done mini carnival days here with all vendors and food trucks, they have dance classes, cooking classes, they have a hairdresser that comes every week
‘There’s a play school where the kids can do normal school-like activities and play together.
‘They also organise days at the zoo or to the footy for any kids able to go out.’
While Arlo and Zimi (pictured with Rocco and Mr Kennewell) are likely too young to understand what’s happening to their brother, Mr Kennewell said they’ve been an amazing support
Between 2,400 and 3,000 Australian babies are born with congenital heart defects every year, like Rocco (pictured with Ms Kennewell)
Hypoplastic Right Heart Syndrome is a congenital disorder, meaning it develops before a baby is born.
Between 2,400 and 3,000 Australian babies are born with congenital heart defects every year, according to Heart Kids, a partner of Healthdirect.
Hypoplastic Right Heart Syndrome specifically causes babies to have low oxygen levels as the heart cannot send enough blood to the lungs.
