Muskaan Grewal didn’t know the little motor whirring inside her chest, keeping her alive, was like a medical medal of honour.
Last September, when she was just five years old, the brown-haired girl with the toothy grin became the youngest person in the world to receive a special type of artificial heart called a Ventricular Assist Device, or VAD.
All she knew was that the invisible machine was keeping her out of the hospital and giving her enough energy to ride a bike and go to school “like a little normal kid.”
Doctors at the Stollery Children’s Hospital in Edmonton also weren’t aware of the amazing feat until just recently, when the HeartWare company that manufactures the VAD told them that is had never had a younger recipient.
So Muskaan and her family from Surrey were introduced to a throng of reporters and cameras on Thursday — even though the pump is no longer in her body.
Doctors explained that the VAD was only a temporary measure, giving the girl freedom from a hospital bed while she waited on a transplant list. Muskaan, now 6, received a real heart in July.
The shy girl, surgery stitches and scars peaking out the neck of her flowered shirt, talked quietly about the 10 months she lived with the pump, how she could feel the machine inside her chest and hear it buzzing “like a bee.”
A thin tube attached to the pump strung out of the skin near her stomach and attached to a battery-powered controller box, which she carried around in a backpack. At night, when she was sleeping, she plugged it all into a wall in her bedroom.
Dr. Holger Buchholz, director of the Stollery’s artificial heart program, said children — even small babies — can get other types of artificial hearts but have to stay in hospital.
It’s more common for adults to get VADS and there are about 30 who do each year in Edmonton. Buchholz said there’s also a handful of pediatric patients who get the pumps —the youngest 13 — but none as small as Muskaan.
Patients typically have to be at least 27 kilograms. Muskaan weighed in well under that at 18 kg.
She was only 10 days old when doctors diagnosed her with dilated cardiomyopathy, a rare condition that weakens and enlarges the heart. She spent years in and out of hospital for treatment and medications and, last fall, was flown to Edmonton when her heart failed.
Her medical team debated whether to insert a VAD.
They measured her heart, roughly the size of an egg. The pump was slightly larger and wouldn’t fit where it normally sits, under the heart.
The Stollery’s chief pediatric heart surgeon, Dr. Ivan Rebeyka, said a VAD had been inserted before in a six-year-old from Berlin, Germany.
“We had to move fairly quickly in terms of making the decision to go ahead, because I don’t think she would have frankly survived for more than another week or two.”
When they got the go-ahead from her parents, Rebeyka inserted the pump on Muskaan’s left side and stitched a portion of it into the left ventricle of her heart.
It worked like magic.
Her parents received more than 30 hours of training: how to change her dressings, watch for signs of infection, replace the battery in her backpack every five or six hours so her heart wouldn’t stop beating. Teachers at her school also received medical lessons.
“Of course everybody freaked out,” said Buchholz. But they soon all became confident with the procedures.
The hardest part, the doctor said, was getting a child to understand how to be so very, very careful with the equipment that was keeping her alive. “Of course, with a five-year-old, you have to teach her: don’t pull on it!”
One day, when Muskaan was working on a craft, waving around a pair of scissors, Buchholz suggested maybe she should try painting instead.
“But in the end, this is what we want — even if my heart rate goes up. We want to give them the best quality of life as possible and make it as safe as possible for them.”
Harman Grewal said his daughter is happy to be free of the pump and its backpack. She is to returning home Saturday and hopes to someday soon go swimming and climb a tree.
BY THE CANADIAN PRESS