Every baby to be screened for congenital heart disease

By January 2018, Ontario will be first province in Canada to test all newborns

Television host Jimmy Fallon gave the world a glimpse into the emotional turmoil families experience when a seemingly healthy newborn turns out to have a critical heart problem. His emotional opening monologue about his newborn’s heart defect became a lightning rod for the U.S. health care debate.

In Ontario, as many as 450 babies are born every year with critical congenital heart disease, many of whom require life-saving surgery and medications. Although many of those cases are diagnosed shortly after, or even before, birth, as many as 30 per cent are initially missed. A handful of those babies die every year in Ontario because of delayed treatment.

In the hopes of reversing those numbers, the province will become the first in Canada to test every newborn baby for critical congenital heart disease, using an oxygen saturation monitor. The quick, non-invasive test, will be performed no matter where the baby is born — including birth centres and homes, said Dr. Jane Lougheed, who heads the cardiology department at Children’s Hospital of Eastern Ontario.

That will allow babies to be treated immediately. Currently, she said, “some are not diagnosed in hospital right away and they may come back to medical attention in very poor condition.” That increases both risk and stress.

Sandra Mahoney understands the crucial importance of early diagnosis and treatment for babies with critical heart problems. Her daughter Adeline, now 2, was born with a complex heart defect, something that was diagnosed while Mahoney was still pregnant. That gave her time to digest the information, to better understand her baby ’s condition and to ask doctors questions. Many families have not been so lucky.

“Stories of babies being rushed back to emergency rooms in distress, stories like Jimmy Kimmel’s, where they are thrilled with their healthy newborn baby and the next thing they know their baby needs life-saving treatment and surgery — screening will help turn those stories into things of the past.”

By January 2018, the province says, all newborns in Ontario will be screened at birth for critical congenital heart disease.

The screening was one of two announced by the province this week, part of what Ottawa South MPP John Fraser termed the “baby budget.”

Ontario will also begin routinely screening newborns for hearing loss.

Ontario currently screens newborns for about 30 conditions, through blood testing.

Newborn Screening Ontario received an additional $2.68 million in base and one-time funding for the new screening in 2017 and 2018. Beginning in 2018, its total base budget will be $14.25 million a year.

Ottawa Centre MPP and Attorney General Yasir Naqvi, who also took part in the announcement held in CHEO’s cardiac clinic, choked up briefly when he realized where it was taking place.

“I have spent quite a few hours in this waiting room along with my wife,” he said. “I never thought I would be making an announcement in this room because I have always been here as a parent.”

Naqvi’s son, now five and doing “fantastic”, was born with some heart defects that required care at CHEO.

“He got a lot of incredible care and this waiting room is close to our hearts.” epayne@postmedia.com