Saving Newborn Hearts

"Some [newborns] are not diagnosed [with critical congenital heart disease] in hospital right away and they may come back to medical attention in very poor condition [increasing both risk and stress]."
"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."
"What we do know from the coroners' reports is that every year there's one or two babies in Ontario who die unexpectedly. Then it's shown on their autopsy they have critical congenital heart disease."
"If we look at babies that die without even getting a diagnosis, we're looking at one or two a year in Ontario, which is too many."
Dr. Jane Lougheed, head, cardiology, Children's Hospital of Eastern Ontario

Dr Jane Lougheed uses a doll to demonstrate how oximetry testing works. Lougheed is the head of Paediatric Cardiology at CHEO . (Jean Delisle/CBC)

Newborn Screening Ontario was assured an additional $2.68-million in base and one-time funding for the provincial initiative of screening all newborns for congenital heart disease, in 2017. From 2018 forward, the total base budget for screening will be $14.25-million annually. All newborns in Ontario from January 2018 onward are to be screened at birth for both critical congenital heart disease and for hearing impairment.

At the present time in Ontario up to 30 percent of babies born with congenital heart disease are unidentified initially. Consequently, a small percentage of those babies die yearly, resulting from delayed treatment of their condition. As many as 450 babies each year in the province are born with critical congenital heart disease, many requiring life-saving surgical interventions and appropriate medications once they're diagnosed; usually shortly after or before birth.

The provincial government has targeted the situation for remediation, becoming the first province in Canada to specifically test each newborn baby with the use of an oxygen saturation monitor, for the existence of congenital heart disease. Irrespective of where the baby is born in the province; hospitals, birth centres, homes, the  swift, non-invasive test will be performed from 24 to 48 hours of birth, to ensure that those babies at risk will be immediately treated.

Two-year old Adeline Mahoney hands out toy hearts during a press conference announcing the new screening program. Mahoney was born with a congenital heart defect. (Jean Delisle/CBC)

Sandra Mahoney was given an early diagnosis while still pregnant, that her daughter Adeline had a complex heart defect. That knowledge allowed her to discover details about her baby's treatment, not in  he atmosphere of a sudden discovery and subsequent emergency situation, but while still stressful anticipating that her newborn's health would be complicated by her heart condition, yet allowing her the relief of knowing that the medical community was prepared to deal with it, to help normalize her baby's life.

Through blood testing, Ontario screens newborn babies for some 30 conditions. Member of Provincial Parliament, Attorney General Yasir Naqvi's five-year-old son Rafi was born with heart defects. "He got a lot of incredible care and this waiting room (at CHEO's cardiac clinic) is close to our hearts", he said at the hospital when the announcement was made. "I have spent quite a few hours in this waiting room along with my wife. I never thought I would be making an announcement in this room because I have always been there as a parent."

The non-invasive screening is best done after 24 hours of birth. (Suzanne Plunkett/Reuters)