Twice a week at 6am, Marie Jujnovich (80) roams the halls of ward 23b in Auckland’s Starship children’s hospital.
She knows the patients and their families by name, and they call her Nana. This has been Nana Marie’s routine for 26 years. It’s not that she has a lot of grandchildren in hospital; rather, the 80-year-old has devoted more than two decades of her life to supporting families with children who have heart conditions.
“I think I’m the only person in the world who is doing a job they love and I don’t ever want to retire,” she remarks proudly.
Her ability to connect with these families comes from a place of experience because Marie has gone through the same journey. Her sixth grandson Nicholas, now 26, was born with a congenital heart defect called Tetralogy of Fallot, a defect with the structure of the heart.
When he was first born, she says, it became apparent Nicholas had a heart murmur. But he was sent home by the doctors when everything had been checked out.
“From there on in, we had this scrawny, tawny little fella,” she recalls. “He never put on weight.”
After sharing concerns with a nurse about Nicholas’ health, the family’s long battle began. It was clear Nicholas needed to see a doctor, Marie says, and in “those ugly old days, it was 12 weeks before we saw a cardiologist!”
Countless tests and visits to medical professionals later, her newborn grandson was in such a grave condition, she and her daughter Donna called in a priest to baptise Nicholas.
“We got a little christening gown and had to hold it up to him to make it look like it was on him,” she says.
“Then he was off to theatre for a Blalock-Taussig shunt operation,” she says, describing the surgical procedure to increase pulmonary blood flow.
Marie is definitely clued up when it comes to the terminology. She never intended to be, but while looking after Nicholas, she was surrounded by doctors and nurses using words she didn’t understand. So she decided to learn, especially after she made the decision to keep coming back to the ward after he was discharged.
“I thought at the beginning, 'I’m not doing that hearty business, I’ll just do grandma stuff' ,but families ask questions and I figured I better swat up.”
Nicholas eventually had an operation to receive a pacemaker and to this day shares a close relationship with his nana.
Despite her family’s traumatic experience, the knowledge and empathy Marie possesses is what makes her so valuable to other families during their toughest times.
“You just can’t get it into your head at first what’s going on and there’s an awful lot who go into denial. When those doctors sit down and tell you what they’re going to do to that little heart, which is the size of a walnut, you never look at a walnut the same again.”
In the 26 years Marie has spent volunteering on the heart ward, she has witnessed major changes in technology.
“I feel like I’m part of history with how far things have come and I’ve seen a lot of miracles,” Marie marvels. “When Nicholas was in hospital, they didn’t have paediatric equipment. Everything was cut down and they used sticky tape!”
But her role, which she fulfils through the charity Heart Kids, has also meant that she has experienced the heartbreak alongside families when their child dies from their illness.
“There are a few families who I’ll never ever forget,” she says. “A lot of them are our heart angels and they’re always very important to me. We have a memorial day for them where we let the balloons go. With the parents’ permission, I put their names on the balloons.
“Quite often, if a baby dies, we have little hearts that we give to parents. It’s something small for them to carry in their pocket for them to hang on to. I believe they are little guardian angel medals.”
She admits it’s not always an easy role but she feels privileged to be able to help the families.
“I’m just doing what I felt I would have liked somebody to have done for my daughter.
“I also think, without these families, what would I be doing with my life? So it’s a two-way street. And without Nicholas, I would never have stepped out of my comfort zone to do this.”
At the age of 80, Nana Marie is definitely not slowing down!
“I know I’m not everlasting. I used to be here five days a week, but I don’t ever want to retire. About 10 years ago, I said to one of the nurses on the ward I must be coming up to my use-by date, and she said, ’Bugger off and go do your work!’” she laughs.
To see how you can support Heart Kids, visit heartkids.org.nz.
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