Little battlers: Heart surgery at 5 days old

Last updated 05:00 13/01/2014

LONG JOURNEY: Cameron at 16 months.

TINY TROUPER: Cameron at seven days old.

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Little battlers: Kids beating the odds

Four years on from our darling Izzy's death Life with a chronically-ill child: Our hour-to-hour, minute-to-minute lives Tears at the school gate for my daughter with cerebral palsy A heart disorder won't stop Kayla I was 'too afraid to kiss my son' Charlie has half a heart, but a full life 'We cry every day knowing the pain to come' Year without Izzy the 'toughest' 'A choice no parent should have to make' This baby was given one week to live

It all began on March 17, 2012, at my 19-week scan.

The Hawke's Bay sonographer told us that something didn't look quite right with our baby's heart and thought we needed to get to Wellington for an in-depth scan.

Two days later, we were on the plane, not knowing what lay ahead of us.

Our baby's diagnosis was hypoplastic left heart syndrome .

We were given several options, and we knew we had to give our little guy every chance we could.

So began our trips back and forth to Auckland for scans and meetings with the cardiologist.

Cameron would not co-operate in utero, so the cardiac team was not sure about his condition. We would have to wait until he was born and could be scanned.

When I was 38 weeks pregnant, we packed our bags and left for Auckland with my mum and our almost 2-year-old son, Cory, not knowing whether we would be bringing home an empty carseat.

On August 22, 2012, at 9.24am via elective C-section, our 6lb 8oz (2.94 kilograms), blond-haired, blue-eyed baby boy arrived, screaming his lungs out.

He was quickly whisked away by the cardiac team to be scanned, poked and prodded.

My husband, Nick, went with Cameron to the neonatal intensive care unit while the team did its job.

It then made a definite diagnosis - hypoplastic right heart syndrome, transposition of the great arteries, tricuspid artresia, aortic artresia, hypoplastic ascending aorta and transverse arch. It also turned out that Cameron's heart had flipped over in his body.

At 5 days old, Cameron had his first open-heart surgery.

Eight and a half hours later, we received a call to say the surgery was over and Cameron was in the paediatric intensive care unit (PICU), ventilated.

We were told to be aware that his chest was still open and would stay that way for a few days to allow any swelling to go down before they could close it.

On day two post-op, surgeon Kirsten Finucane phoned us to say she would close his chest as she was happy that all was going to plan.

Cameron stayed in PICU for 12 days, after which he was transferred to the children's heart ward, where he stayed until had put on enough weight to be discharged, eight weeks later.

The road to recovery was long and full of ups and downs, and there were moments where we were prepared for him to not make it through the night.

Thanks to the skills of an amazing medical team at Starship, Cameron amazed everyone and pulled through.

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On November 13, 2012, we returned to Starship for a routine CT scan. He was outgrowing his shunt, so his second surgery, the bidirectional Glenn, was booked for December 4, 2012.

With Cameron just 15 weeks old, we said our goodbyes and placed him in the skilled hands of Kirsten Finucane yet again to endure another eight-hour operation.

All went perfectly well and he was in PICU for only two days, then up to the heart ward for another four days to wean off oxygen and establish feeding again, which he did brilliantly.

He was discharged to Ronald McDonald House seven days post-op to hang out with us and his big brother until his sutures were taken out on day 13. Then it was back on the plane home in time for his first Christmas.

Cameron has regular appointments here in Hawke's Bay with his paediatrician, and his cardiologist from Starship sees him every six months when he comes down for a heart clinic at our local hospital.

Cameron will have yearly cardiac catheters to check the flow through his arteries and pressures in his heart.

When he is about 3 years old he will return for his third open-heart procedure, the Fontan.

Our journey has been extremely hard financially and emotionally, but we wouldn't change it for the world.

Without my mum, who took six weeks' leave from her job to go to Auckland to support us and look after Cory, and the kind thoughts and love from our wonderful friends, we would never have got through this.

The support from everyone has been amazing.

We would have to say that this has been the most humbling experience, and we are so proud of Cameron, who is now an almost 17-month-old toddler running round like any other kid. 

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