Alison Wekking and Chris Moore from Dunedin are two of the unlucky few heart parents in New Zealand who have had both of their children diagnosed with two different congenital heart diseases (CHDs). Their son Riley (6) and daughter Casey (4) have both had open heart surgeries and several hospitalisations in their short lives.
More than 600 babies are born with a Congenital Heart Defect (CHD) every year; that’s 12 babies every week. Often, they have their first open heart surgery within weeks of being born. But undergoing heart surgery is not a cure for CHD. It helps them live, but having CHD presents them with unique challenges for the rest of their lives and for many, this includes ongoing medical treatment and repeated heart surgeries.
Riley has subaortic stenosis (status post repair), a blockage or narrowing that makes it hard for the left ventricle to pump blood to the body. Casey has Shone’s Complex, a rare form of congenital heart disease where there is a combination of four left-sided heart defects. Mum Alison finds it tough knowing that their hearts aren’t quite right and is always extra cautious when they get sick or if they start to appear blue.
As heart parents, Alison and Chris have had to endure a total of four open-heart surgeries and three more hospital admissions.
“It is such a scary, uncertain and emotional time when your child is given a cardiac diagnosis. We would be lost without Heart Kids, as the visits from the Heart Kids team while we are in Starship are incredibly consoling,” says Alison. But she adds that cardiac kids are amazing: “they are all so strong and resilient, my two are definitely a lot stronger than me! They all take their diagnosis in their stride”.
Riley and Casey go through hospital procedures – ECGs, echos, blood tests, x-rays – like it’s normal. Leading up to surgeries, they show an incredible bravery by never being scared and remaining calm.
Heart Kids calls children with CHDs ‘Brave Hearts’. The not for profit provides both practical and emotional support, and Alison and Chris say it was “the continuous support before and after surgeries that was so appreciated. Being able to catch up with Marlene (their Heart Kids family support worker) and the family support workers in Starship to discuss all our fears, worries, having a laugh (and a cry), and even having them come to our house after returning home from another surgery has truly been like nothing else”.