Nora: growing with a new heart Nora: growing with a new heart

Having a heart attack at birth, Nora faced life-threatening challenges immediately after birth, requiring a heart transplant at five months old. Her recovery brought new life, and today she’s an active eight-year-old enjoying activities like soccer and gymnastics. Though her future holds risks, her family cherishes her current triumph over congenital heart disease.

A birth, then a crisis

Nora turned blue just minutes after she was born. “She might not make it tonight. Prepare yourself,” hospital staff told her shocked parents.

At first, staff at the hospital in Hamilton, Ont., didn’t know what was wrong, then realized it was Nora’s heart. But Aleasha could barely take it in. She had just given birth to twins and was more worried about Nora’s brother, Koa, who weighed only four pounds, four ounces.

Paramedics fought to keep Nora alive as they rushed her by ambulance to Toronto’s Hospital for Sick Children. For the next several days, doctors and nurses tried repeatedly to wean Nora off the machine. “But her heart wasn’t kicking in,” says Aleasha.

Over and over, medical staff told her and her husband, Shane, to prepare themselves: their daughter might not make it, her heart was so damaged.

Why was this happening? The couple were mystified. There was no family history of heart problems on either side. Heart & Stroke researchers such as Dr. Seema Mital are making progress on that mystery, investigating the genetics behind congenital heart defects.

Finally, Nora was stabilized with medication so she could come off the bypass machine. She was 11 days old when her parents held her for the first time. “It was only for 20 minutes, but you take what you can get,” says Aleasha. “I have a picture of it. You can see, it’s so raw.”

Nora had been diagnosed with a congenital heart defect leading to cardiomyopathy, which means her heart was unable to properly pump blood. She needs a heart transplant to survive.

By then, the family was living at Ronald McDonald House, a couple of blocks from the hospital. Every morning, Aleasha would bundle Koa into the stroller around 6 a.m. and head for Sick Kids. She would spend the day with both babies, waiting and hoping for a heart that would save her daughter’s life.

A new heart, a new life

Five months after her birth, Nora got her new heart. “She was a different baby immediately,” Aleasha recalls. The next day, Nora was wide awake and sitting up. She was soon able to eat. Six days after surgery, Nora finally left the hospital.

Now, this clever eight-year-old takes Muay Thai classes and relies on her devoted brother to hold her hand when she gets blood work. The family participated in Heart & Stroke Ride for Heart, raising funds for research that will help more kids like Nora.

While Nora has few side effects of her early health problems, anything can happen as the years pass, including a higher risk for cancer or the need for another heart.

“I do fear for her future,” says Aleasha. “But I don’t want to put any limits on her.”

For now, Nora is beating congenital heart disease. And that’s enough.