Heart screening a first in Canada
Test for newborns in Ontario could end ‘ticking time bomb’ of undetected problems
New parents can leave the hospital with no inkling anything is wrong with their newborn — only to find out days later their child has a serious heart defect.
In a first for the country, Ontario will now screen babies for congenital heart issues hours after birth, a move that is expected to help hundreds each year.
“Unfortunately, there are still a couple of deaths every year from critical congenital heart disease, and we feel we should be able to prevent that,” said Dr. Jennifer Russell, interim head of cardiology at Toronto’s Hospital for Sick Children.
While some U.S. states have started similar screening, Ontario is leading the way here, with other provinces such as British Columbia looking to follow.
Nancy Freedman’s daughter, Roxy, was born in 2008 and it wasn’t until her three-month checkup that a heart murmur was discovered. Roxy was later treated at Sick Kids for a faulty mitral valve.
“It was a ticking time-bomb scenario,” Freedman said, adding Roxy had no outward symptoms and, at age 3, underwent surgery. The night before the procedure, “she was jumping from the chair to the bed.”
Roxy was discharged a few days later and, a day or so after that, was back to her energetic self. She continues to go to Sick Kids for monitoring, but is not expected to need any other procedures.
“We had done all the screening you normally do while pregnant but, without a doubt, it should have been caught when she was born,” added Freedman, although that wouldn’t have changed the timing of the surgery.
“The percentage of children born with heart defects . . . it’s an unknown fact in the general population,” said the Oakville mom.
The test for critical congenital heart disease is simple, does not require a blood sample and can be done at the hospital or by a midwife if a family opts for a home birth, said pediatric cardiologist Dr. Jane Lougheed of the Children’s Hospital of Eastern Ontario, where the screening was announced earlier this month. Although some defects are detected prenatally, “the reality is, people are not having a very focused look at the heart” during an ultrasound, she said.
The newborn screening is conducted between 24 and 48 hours after birth. The probe “looks like a BandAid with a red light on it,” she said. It is wrapped around the baby’s finger or hand and the light picks up oxygen levels in the blood. The procedure is then repeated on a lower limb. Ottawa-area mom Sandra Zimmerman Mahoney considers her family lucky because her daughter’s heart defects were picked up by an ultrasound during pregnancy.
“I’ve heard stories where babies were born and something wasn’t right, but later they had to be rushed to hospital, limp and needing emergency surgery,” she said.
Adeline, now 2, has already gone through several procedures, including open-heart surgery, and will need more during her life.
Recently, late-night talk-show host Jimmy Kimmel spoke about his own newborn’s diagnosis with heart troubles.
In Ontario, newborns are screened for 30 diseases, which the government touts as among the most extensive around the globe. It has spent more than $60 million funding the programs in the past four years. MPP France Gelinas, the NDP health critic, said “any movement toward prevention and early detection will be better for those families, will be better for those infants, better for those people.”
The move hit home for Ontario Attorney General Yasir Naqvi, who was on hand for the announcement in Ottawa.
“Our son Rafi was born with minor heart defects,” he said in an interview. “It was a high-risk birth, and the moment he was born, he was taken to CHEO just to make sure he was fine. We have been regular users of CHEO and that particular cardiology clinic.
“It was fairly emotional for me — I still get a little emotional thinking about it — because we have been in that wait room many, many times.”
Rafi, now 5, “is doing fantastic . . . he’s doing very well,” added Naqvi. “These are important services that make an impact on people’s lives. My family’s story is but one — but there are many, many more where these tiny babies come into this world, and they can have some serious health challenges.”
About 12 of every 1,000 babies are born with a congenital heart disease, one-third considered critical with defects of the heart or blood vessels. In Ontario, that’s up to 450 babies each year.
“Ontario has emerged as a leader in the newborn screening landscape,” said Dr. Pranesh Chakraborty, director of Newborn Screening Ontario, whose family conducted an informal pre-test of the heart screening when their baby arrived last August with the help of a midwife.
Up to 100 babies are discharged from hospital each year in Ontario, undetected. The screening will be fully in place across the province by the end of the year.