Walking into the Emergency Department at the Perth Children’s Hospital with their sick two-year-old daughter Amelia, Brianna and Russell felt…
The arrival of a baby is a time of great joy and happiness. Parents look forward to welcoming a precious new member of their family. But imagine hearing that your unborn child has a serious medical condition. That they require on-going and intensive treatment and that months of surgery and years of hospital visits lie ahead.
This was what happened to first time mother Emma.
Pregnant and attending a routine check at 27 weeks, Emma was told her baby had a dangerously low heartbeat and was unlikely to survive. A further scan diagnosed a complete atrioventricular heart block – the malfunctioning of the critical electrical impulses that tell the heart to beat.
I was given the devastating news that Malin was in heart failure and his heart could stop at any time
At 32 weeks and against all odds Emma’s tiny baby boy was born. When he was just two days old, Malin underwent a general anaesthetic and a specialist paediatric cardiothoracic surgeon inserted a tiny pacemaker weighing just 12 grams. Malin had more surgery at seven weeks and spent his first ten weeks in hospital – including his first Christmas in Neonatal Intensive Care – with mum Emma by his side.
Malin started life under the care of eight different departments at the hospital, attending three to four outpatient clinics a week. Also born with a hole in his heart and long QT syndrome – a life threatening cardiac arrhythmia which means his heart beat is either too fast or too slow – monitoring, scans and appointments are a regular part of Malin’s life.
A ‘normal’ year for Emma and Malin includes eight to ten visits to Emergency and at least three hospital admissions. He will most certainly need surgery in the future including replacement pacemakers every five to seven years.
How can you help?
Each year over 11,000 children undergo surgery at Perth Children’s Hospital (PCH). Many children with life threatening and critical illnesses require multiple procedures, each under general anaesthesia which can have risks.
Hospital specialists are particularly concerned with the respiratory risks anaesthesia can present to very young patients during surgery. With the large number of children requiring surgery, many unplanned, the hospital’s resources are stretched at times. This makes it difficult to assess each child’s potential risk in advance.
The PCH team are constantly exploring alternative techniques to quickly and easily identify children at high risk of complications. They are seeking support to purchase new equipment that will enable them to assess the stability of a child’s airways during anaesthesia and surgery. This equipment will reduce the number of adverse events and enable informed decisions to be made about individual children’s care. It will also assist with the hospital’s on-going research into techniques to reduce the time and potential side effects of anaesthesia.
With your help we can acquire this equipment and make a real difference to our young patients.
By making a donation today you will be making a huge difference. Your generosity ensures that our specialists are able to provide critical care to children like Malin and many other young patients like him. Click below to support the Foundation and make a donation.