If it wasn’t for the support of Heart Kids NZ, and the backing of his wife Tash, John O’Leary isn’t sure how he would have coped looking after his son Aiden.
“Heart Kids NZ were instrumental in keeping me going to keep him going,” John says.
Aiden is now 1 year and 5 months old. He was critically ill when he was born. Heart and lung issues mean the little trouper, who has a smile that melts hearts, has spent more of his short life in hospital than at home.
“He’s always bubbly,” John says. “He’s cheeky and he blows lots and lots of raspberries.”
Aiden was born on May 18, 2022, via emergency caesarean.
He had swallowed a lot of meconium and was very sick. Doctors told John and Tash to prepare for the worst – Aiden might not live.
“He was swollen …. his eyes were swollen shut. He was a very critically ill baby,” John says.
Aiden was diagnosed with Down Syndrome the day after he was born, and doctors discovered he had heart issues when he was two days old. He had two holes in his heart – a 6mm VSD, a small ASD and a leaky PDA valve.
“Both sides of his heart were leaking into each other.”
Aiden also had serious lung problems due to the meconium he had ingested. Aiden spent three months in NICU at Christchurch Hospital before he was flown to Starship Hospital for heart surgery. Before going to Auckland doctors also fixed a blood clot to his liver. John, who has been the primary carer for Aiden in hospital, says the wait for Aiden’s surgery at Starship was difficult as it kept being cancelled.
It took about a week for the surgery to go ahead. His operation on his heart finally happened on the morning Tash had to return to Christchurch to care for her other sons. This was stressful for John who had to face the long wait to hear if Aiden was okay alone.
Aiden’s recovery initially went well. But when John left the hospital for the first time in weeks, he received a call saying Aiden had been rushed into surgery as his right lung had collapsed. This meant more time in Auckland, before the two of them could return to Christchurch Hospital to the high care ward.
Aiden finally went home when he was four months old.
But he has been in and out of hospital with respiratory issues since then. John says the family have had a few terrifying trips to Christchurch Hospital via ambulance after Aiden had breathing difficulties at home.
“Several times at home he would go grey and blue … to the point where it’s … we need the hospital.”
In December Aiden got a nasty bout of the RSV virus which knocked him so badly the doctors said they nearly lost him five times. He was so ill he needed to be intubated and sent back to Starship Hospital, and Aiden and John were there for another 45 days.
“The doctors both here and at Starship were telling both Tash and I prepare for the worst. We don’t think he’s going to make one-year-old.”
But Aiden has proven he is a fighter and has a lot of spirit. Despite that it has been a tough road for the family, who have often had to be separated. Aiden has had five surgeries and is due for two more procedures in the short term – getting a GJ Mic-Key button put in and possibly his tonsils out which would be his seventh surgery.
John has been diagnosed with PTSD as he has watched his son undergo so many tough medical procedures. During their tough journey Heart Kids NZ have been beside them providing them much needed help.
“Heart Kids has been absolutely amazing. Through all the surgeries through all the disruptions health wise and costs and things like that they have really stepped up for us.”
At Starship Hopsital, Heart Kids NZ provided much needed financial and moral support. They gave Aiden a Heart Kids NZ package that included a bear and came in regularly to check in with Aiden and to see how John was going. Surviving on a benefit and keeping the family going back in Oxford near Christchurch was tough, and he said the Countdown vouchers Heart Kids supplied so he could buy food were a great help.
“The ladies from Heart Kids NZ were actually amazing and they understood the situation … every so often they would pop in with coffee vouchers as well.”
Back in Oxford their Heart Kids coordinator Claire has also been a lifeline.
“We were getting so many ambulances from Oxford. It was costing around $95 a visit. The bill was horrendous.”
John says Heart Kids set them up with St John with a plan for ambulance rides and also helping ensure Aiden has the emergency care he needs when they call an ambulance.
“Having that for him has actually made a huge difference.”
John says Claire often pops by with cakes and has a cuppa with them to check in and see how they are going.
“Even without even asking, Heart Kids NZ just showed up and said we’re here. What do you need?”
It’s also given him great piece of mind knowing Claire will visit Tash when he is taking care of Aiden in hospital.
“She checks in with Tash every so often just to make sure she’s okay as well. She’s been really connected with the family.”
Having the help from Heart Kids NZ has meant the family can stay together and he hasn’t had to shift to Christchurch so he and Aiden can be closer to the hospital.
“Heart Kids have kept us together,” John says. “Heart Kids to us is family. Without Heart Kids I don’t think we would be where we are now.”