Always Pushing the Limits with a Smile
We hear a lot about children with heart defects and the struggles they face at school, the weeks and sometimes months spent in hospital and the pressure on families when their child faces multiple surgeries. But we don’t hear a lot about what happens to those children when they grow up.
For many, their broken hearts have been repaired and they’ve learned to live within their limits. But for others, that’s not always the case.
Chrissa is a 29 year old heart adult, she also has a mild intellectual disability. Born with Tetralogy of Fallot, Chrissa underwent a full heart repair at just 11 months old. It was a traumatic time for parents Mike and Helen and older brother David. It was all-consuming and it turned their world upside down.
“We received a lot of support from Heart Kids which really helped but it was a tough time,” explains Helen, “but looking back I think I’m a much better person for having gone through it. I have a lot more empathy for others, and it made me realise there is always someone worse off.”
Helen says Chrissa is a girl who has grasped life with both hands. “We have always told her that having a congenital heart defect and a disability is part of who she is, it is not WHO she is. She is not defined by it.” And Chrissa has certainly lived her life by those rules.
What Chrissa has achieved puts many able-bodied people to shame. She is a self-proclaimed Zumba junkie, she works at the local New World supermarket three days a week, she’s a keen cyclist and she volunteers as a reader/writer once a week at the Unitec course she herself attended 5 years ago.
She has also competed in the Special Olympics in basketball and was the only female in the team. She is engaged and set to marry in the next year.
So you can imagine the surprise, when 28 years later, Chrissa was told that her heart was struggling and she would need a valve replacement. It was a full open heart procedure.
“With so many good years in between, as a parent the news really hit us hard,” says Helen. “When the cardiologist told us I burst into tears. It was totally out of the blue and I felt like I was almost back in the space where we were years ago,” explains Helen.
Chrissa went ahead with the surgery, and during a routine check up months later, they were delivered more bad news. The pig-valve replacement had failed and Chrissa would need a balloon procedure to widen the valve. “It really knocked our confidence as parents. It’s also been really difficult for Chrissa. As a baby, they have no idea what’s going on, but it’s a very different story now.”
The procedure had never been carried out in New Zealand, but they didn’t mind that Chrissa was to be the first in the country to try it. “Without all the firsts over the years we would not have many of our heart children alive today!”
The operation went without a hitch and Chrissa has now fully recovered and is back into Badminton, Zumba, Basketball and her job at New World. “We as parents are gaining our confidence back as well, and hopefully this valve will last a while. It has reminded us that Heart Kids are there for life whenever the need arises. We’ve been amazed at the network of support around the country, and also the maturity of these heart kids and how they all support each other.