By: Noor Javed News reporter, Published on Fri May 03 2013
Arhum Noor stands poised ready to wrestle with her father, Abdul Rahman.
“Show us how strong you are,” Rahman jokes with his 5-year-old daughter, as he pretends to fall to the ground after she pushes him. Arhum laughs, climbing into her father’s lap as her 19-month-old sister Mahum clings to his arm.
“They are both daddy’s girls,” says mom Asma Sabir, smiling as the girls play and fight with each other in their apartment near Don Mills and York Mills Rds. “They constantly fight for his attention.”
It’s a lovely family scene that could be playing out anywhere in the city. But for this family, these moments are more than momentous, they are miracles.
As Arhum twirls in her flowery dress, it’s almost impossible to tell that she has a new heart. Or that now, although her heart has settled in, she is facing another battle: PTLD, a type of cancer associated with heart transplants.
“She’s a miracle child,” says Sabir.
Before Noor was born on Nov. 9, 2007, Sabir was informed by her gynecologist that there was a problem with her baby’s heart and she would require surgery.
On the day of her birth, Arhum’s heart rate plummeted, forcing doctors to conduct an emergency c-section. “I held her for less than three minutes before she was taken away from me,” Sabir recalls.
Three days later, when she was just 72 hours old, Arhum had open-heart surgery to insert a BT shunt. Over the next 24 hours, she needed to be resuscitated three times, and was eventually placed on a heart and lung machine to keep oxygenated blood flowing through her tiny body.
“By this time, her own heart was dead,” says Sabir. “When I left her that night, I was not sure what was going to happen.”
The next day, the doctor told her that Arhum needed a heart transplant, but he wasn’t sure she could even survive the surgery.
Sabir prayed all night for guidance on whether she should wait for a donor heart, or simply let her newborn go. “I prayed to God, ‘Please don’t let me make this decision. Please make it for me.’ ”
Hours later, the doctor called. They had a heart and 40 minutes to decide if they wanted it. Sabir called her husband, who was working in Saudi Arabia at the time, with the good news. They decided to proceed.
SickKids is among the leaders in pediatric heart transplants in North America, and does 15 surgeries a year, says Dr. Anne Dipchand, head of the hospital’s heart transplant program.
The biggest challenge for a child less than a year old is simply finding a donor heart, which is why they have the highest wait-list mortality rate.
But if they do get the surgery, babies generally do better than older heart transplant patients.
“About 70 per cent are still alive into early adulthood,” says Dipchand.
Arhum’s surgery took all day. Her chest remained open for a week afterwards, to help ease the swelling. Two months later, she finally went home for the first time.
When Arhum was six months old, Sabir took her to the Middle East to visit her father.
“When she saw her dad for the first time, she literally jumped on him,” says Sabir.
They returned home 18 days later, leaving dad behind. “It’s been hard on me,” he says, “but (Sabir) has been handling everything alone.”
Sabir received immense support from her parents and friends during the two years it took Rahman to get immigration approval. And now, unable to work as an industrial engineer, he’s working at a motel in North Bay.
Over the next three years, Arhum responded well to her new heart, with almost no rejection. “We thought we were in the clear,” Sabir says.
But in 2011, Arhum was diagnosed with PTLD, a cancer that Dipchand says about 10 per cent of child transplant patients develop.
At about the same time, doctors discovered that little sister Mahum had problems with one of her kidneys. She underwent surgery, but still has no function in the organ.
Rahman has stayed home to help Arhum through two rounds of chemotherapy. “Fortunately, or unfortunately, she always wants to be with me,” he smiles.
While the family waits to see if the cancer returns, Rahman says Arhum is their biggest motivation.
“She is very brave. She’s the one who keeps us going. When we see her happy, how can we be sad?”