Three year old Jackson Ryder is a blue-eyed boy who lives life at 100 miles an hour. Looking at him today, you would never know he had a life-threatening heart defect.
But in his short life, Jackson has already had two major heart surgeries. He is waiting for his third and hopefully final surgery in spring 2020. “Half a heart, NOT half a life is our motto!” says his mother, Krystal.
12 babies a week are born in New Zealand with a congenital heart defect – that’s one in every 100 births.
The family’s journey with the heart condition started when, following Krystal’s 20-week scan which is usually known by parents as the ‘boy or girl?’ scan, the sonographer told Krystal and her partner Mike that they needed to speak with foetal medicine specialists. An anxious wait followed until they got the news that Jackson had Hypoplastic Left Heart Syndrome. Essentially Jackson only has half a heart. His left ventricle didn’t develop and is unable to pump oxygenated blood around his body, so Jackson and Krystal spent the first four and a half months of his life in hospital.
It was a terrifying and lonely time, but Krystal says that the daily visits and hot meals brought by Diane and Katya from Heart Kids were both comforting and reassuring. “They’re in a unique position. They’re able to have a connection with us while understanding everything we are going through. Unlike the doctors and nurses who have to keep it professional and not get too close.”
And that support continued when they got home. “When you leave hospital, it can be really scary. Suddenly you’re the one in charge of your baby, without the support of medical staff. Having Heart Kids there, just a phone call, text or a visit away, makes the world of difference.”
“I’ve always felt like Heart Kids has been a cornerstone in the village that it takes to raise Jackson, I couldn’t imagine doing this without them.”
Heart Kids support
Jackson, at age three, has just started kindy, delayed by the fear of picking up bugs and infections, which has been quite isolating for the family. Visits from Heart Kids family support workers Montee and Leanne really help, along with the special Murmurs coffee groups of other parents with Heart Kids. Being in touch with people who understand the medical terminology and challenges makes a real difference, as Krystal can chat about her recent and upcoming hospital visits, without having to explain everything.
“As hard as our family try, no one really understands what you’re going through, and frankly I wouldn’t want them to. So to have other parents to talk to is just incredible,” says Krystal.
Don’t go on Google!
When asked if she had any advice for parents who might be going through something similar, Krystal says, “Everybody copes in different ways. The main thing is understanding how you and your partner are going to cope, and to be kind to each other. It’s OK to grieve the loss of what you had imagined – that “normal” life with a newborn.”
Another tip she gives to new parents of a Heart child, “Don’t go on Google! You’ll go down a dark rabbit hole and worry about the future based on statistics that don’t reflect your own situation. It can be hard to process it all and so often you are just in survival mode, you forget to take notes or photos but there will be a time you wish you had. It’s really incredible to look back on the stories I’ve written about our experience and know that I can share that with others and with Jackson when he gets older. Most importantly, use the support around you – it’s OK to ask for help.”
Heart Kids is a not-for-profit organisation dedicated to supporting New Zealand children with heart defects, and their families.