RILEY Casey is two years old and has a special heart. Her parents, Jessica and Sean Casey, are special too, sharing their story this Valentine’s Day for children with heart defects.
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Sweetheart Day, held each year on February 14, aims to raise awareness and funds to support children with childhood heart disease.
Eight kids are born with a heart defect every day in Australia. Riley was diagnosed at her 20-week antenatal scan at the Mount Isa Hospital.
Riley’s mum describes the rare condition in medical and simple terms.
“Riley has a double inlet left ventricle which means she is missing a right ventricle,” Mrs Casey said.
“She has half a heart and it needs to be re-plumbed. One per cent of children have a congenital heart defect and only one per cent of that small pool are in the single ventricle defect spectrum.”
Upon Riley’s diagnosis, the Mount Isa Hospital pediatric team arranged urgent referrals for tests and appointments with tertiary hospitals.
It was such a relief to come back to our home and the comfort of our family and friends.
- Mrs Casey
Mr and Mrs Casey travelled to Brisbane four weeks before the planned cesarean section to prepare for Riley’s birth with the team at the Cardiac Unit at the Mater Hospital in Brisbane. After Riley was born, she was transferred immediately to the Neonatal Intensive Care Unit (NICU).
“She was blue but despite lots of lines and tubes, we were able to touch her in those first days,” Mrs Casey said.
Riley underwent her first open heart surgery when she was just four days old and her parents were able to have their first cuddle before she went to theatre.
“It was the longest 12 hours for us,” Mr Casey said.
For the next three months, Riley remained in the Brisbane hospital, recovering and preparing for her second surgery. The second surgery went well and the family were finally able to return together to their Mount Isa home afterwards.
“It was such a relief to come back to our home and the comfort of our family and friends. It was also very comforting to know we could continue to see Dr Justo closer to home,” ” Mrs Casey said.
Dr Robert Justo is a pediatric cardiologist who treated Riley in Brisbane and regularly visits the North West Hospital and Health Service.
The family are also supported by Natalie Thomas, the Clinical Nurse Coordinator with the Rheumatic Heart Program. Mrs Thomas works with the North West Hospital and Health Service community health team.
Mrs Thomas sees her role as the link between North West families, the local clinicians and the visiting cardiologists.
“Over the past 12 months, our service supported about 200 patients with congenital heart disease, acquired heart disease and investigations,” Mrs Thomas said.
“Admittedly, Riley’s condition is very rare.
“More than 50 per cent of the patients we see have rheumatic heart disease, which is still very prevalent in the North West.
“We have been working closely with our outpatient clinic team, our paediatric team and our health workers to improve how we assess, monitor and treat our patients.’’
The North West HHS introduced regular outreach trips last year for paediatric cardiology patients.
“At our regular check-ups, we measure and record patient’s vital signs and monitor any changes,’’ Mrs Thomas said.
“We can also conduct an echo screen which is like a fast scan of their heart. It gives us an early indication of rheumatic heart disease or congenital heart disease.
“It is wonderful to offer more opportunities to review and screen patients who may be at risk, closer to home.’’
Riley sees the visiting cardiologist every six months at the Mount Isa Hospital.
At Riley’s most recent review appointment this month, Mrs Thomas checked her blood pressure, oxygen saturations and helped set up for an echocardiogram.
Dr Justo discussed the results with Riley and her family and confirms the final of her three staged surgeries is scheduled for 2018.
Riley is a very bright toddler who is well-behaved whilst seeing the doctor and having photos taken.
Her parents share that Riley has regular doctor appointments and she enjoys all normal toddler things as well.
“She loves her food, she is a fan of Peppa Pig and she sings non-stop,” Mrs Casey said.
“She loves playing with her cousins and has just discovered slides.”
Mrs Casey said it helped them to connect with other parents with similar experiences and add in their own research.
“My cousin also has a child with a heart condition. Their book Sam’s Heart really helped us,” Mrs Casey said.
“It is really important for everyone to obtain expert medical advice and take your time with your decisions.’’
Mr Casey said they were provided with scary statistics initially.
“We were told she may not survive the first night but Riley keeps on beating the expectations,” he said.
“As time passed, and with every different specialist we saw, the statistics became more hopeful.
“We do not know exactly everything in her future, but was also do not know what is to come in medical advancements.’’