When six-year-old Muskaan Grewal received her Delta Rotary Youth “Golden Heart” Award, she was so excited she began screaming and jumping around the house.
That might sound typical for most little girls, but Muskaan isn’t most little girls.
The award was in recognition of the inner strength she showed while enduring countless surgeries and medical procedures. Born with a heart defect in her left ventricle, Muskaan has walked a narrow tightrope between life and death since the day she was born.
As a result, she’s spent more time in a hospital than she has in school.
“She’s truly a miraculous child,” says Ragini Kapil, the principal of Jarvis Elementary in North Delta who nominated Muskaan for the award.
Muskaan’s condition has been plagued her since birth, but when she turned four, she asked her parents if she could go to school with all the other kids.
Kapil says the school knew it was getting a student with significant health issues and were prepared to meet the challenge. What they were unprepared for, however, was the little girl’s way of making everybody she meets smile.
“In comes this little angel and in a very strange quirk of fate, her name Muskaan means a smile [in Punjabi],” says Kapil.
Unfortunately, Muskaan was so weak when she came to school that she had to have an adult with her at all times and wasn’t allowed to play. For a bright-eyed and cheerful little girl it was difficult to bear.
One day she couldn’t restrain herself. She put one foot on the playground and prepared to take a step up. She collapsed, unconscious.
As it turned out, Muskaan’s ventricle wasn’t able to pump enough blood to her heart to maintain even modest exertions. It seemed as though she’d never be able to play like other children.
By December 2011, Muskaan had to be hospitalized. At first she could lay in bed and watch videos on her iPad and Kapil would visit and the two would talk and laugh. But before long she had to be placed on a feeding tube because she was too weak even to eat.
Over the course of the next six months she was put on a waiting list for a heart transplant at BC Children’s Hospital. But doctors feared she wasn’t strong enough to survive the surgery even if a heart did become available.
That summer her heart stopped and her father performed cardio pulmonary resuscitation to revive her. The decision was made to fly her to Stollery Children’s Hospital in Edmonton in the hope for a transplant.
By October of last year, Muskaan’s health continued to deteriorate to the point where doctors suggested an experimental surgery that had never been performed on a child.
The procedure involved the installment of an adult-sized Ventricular Assist Device (VAD) to mechanically pump blood to the heart. Muskaan’s parents decided it was the only way to give her a quality of life.
During surgery, Muskaan’s heart stopped. Surgeons continued to manually pump blood to the heart using CPR until the device was successfully installed.
Thanks to the pump, Muskaan’s strength grew and soon she was riding her tricycle around the hospital and visiting other patients. One woman whom Muskaan enjoyed visiting became so weak that she couldn’t speak anymore.
Muskaan told her not to worry, “I’ll talk and you smile.”
When Muskaan returned to Jarvis Elementary, she was able to play with the other children on the playground for the first time.
“The biggest problem we had was keeping her down, because we’re used to being so careful with her, and now she’s running everywhere and skipping,” says Kapil.
Muskaan’s mother Sukhdeep was used to being her 24-hour nurse, and would even go to school with her. Kapil says she remembers one day Muskaan was in her office and she turned to Sukhdeep and said, “it’s OK, mom, you can go, I’m fine here.”
Although her health was substantially better than before the operation, Muskaan continued to battle infections and other health issues. In June she suffered a stroke while in BC Children’s Hospital, affecting the left side of her body.
Muskaan’s father Harman says he’s amazed at Muskaan’s boundless optimism. Even two days after her stroke she was trying to walk again, dragging her left leg behind her.
“She’s never sad, she never cries,” he says. “She wants to walk and run again.”
After her stroke the family flew back to Edmonton and await a heart donor. On July 16 at 10 p.m. the family learned a heart had become available and 16 hours later Muskaan went under the knife for the transplant procedure. Before she went under general anesthetic she was laughing and joking and singing with the surgeon, says Harman.
“It’s like she knew she was going to come back again,” he says.
After 10 hours of surgery, doctors declared the transplant successful. Muskaan had a new heart. It’s a little big for her tiny body, but she’ll grow into it.
Kapil says it’s not just the story of Muskaan that’s amazing, but her irrepressible optimism.
“It’s the courage of her and her whole family to keep going and keep that attitude of looking forward and not giving up.”
Harman says his daughter will be able to return to Delta in two weeks and begin her new life as normal six-year-old girl.
“We always look at our daughter and her smile and we totally forget about everything, including the pain.”
To send Muskaan your well wishes and support, you can “like” her Facebook page right here.