Quebec should equip itself with a database to ensure better medical care for premature babies throughout their lives in order to better understand and prevent serious diseases, say several experts.
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“In Quebec, we don’t have centralized data on preterm births,” said Canadian Neonatal Network Associate Director Dr. Marc Beltempo. We have no idea what happens to these children seven or ten years later and how we can offer better services to make prevention more effective.”
“You can’t improve what you can’t measure,” complains the managing director of Préma-Québec, Ginette Mantha, who wants to set up a competence center.
Ginette Mantha, Executive Director of Préma-Québec
The newspaper reported yesterday that premature babies are born and grow up healthier than 15 years ago due to medical advances. Each year, more than 6,000 babies (7% of births) are born before birth, ie before 37 weeks of gestation.
One thing is certain: very preterm babies born in Quebec every year are more likely to develop all kinds of health problems (heart, lungs, attention deficit disorder, etc.).
Those born before the 29th week of pregnancy are also almost four times more likely to have an autism spectrum disorder, notes Dr. Beltempo, who works as a neonatologist at McGill University Health Center in Montreal.
The expert believes that the province should set up a provincial register similar to that in Ontario (called BORN) or British Columbia, where information is compiled.
“We want the data to be collected in the same way to have better statistics,” says Ms. Mantha. But it costs time and money. In order for us to invest, premature babies need status, and that’s not great.
“Once he grows up, there’s not really a follow-up. There is a shortage on that side,” notes neonatologist at Laval University Hospital Center in Quebec, Dr. Christine Drolet.
according to dr Beltempo could set up all kinds of screening tests for very premature babies, for example from the age of 50.
“Are there cardiovascular things to consider? Should screening be done earlier than the general population? asks the neonatologist. You have to know that in order to be able to offer better healthcare.”
Speech therapy, ergotherapy, school delays: Premature babies often have more needs at school too.
“It’s one thing to follow them and see the delays, but you also have to have the resources to help and support them, these children. The further we advance, the more the resources crumble. It’s difficult,” explains Dr. drolet.
A taboo subject in society
Even though more than 10,000 parents are affected by preterm birth in Quebec every year, according to Préma-Québec, this ordeal is one of the most difficult and remains taboo in society.
“The baby’s health is one thing, but with everything that comes with it, it’s not bad, it’s always difficult,” notes the organization’s executive director, Ginette Mantha.
“There are fathers who have to go back to work, who call the crisis hotline out of breath to support all of this. We have them in the office every week,” says the woman who founded Préma-Québec in 2003, which helps parents of premature babies.
Although medical breakthroughs offer a better quality of life for babies born before 37 weeks, their arrival into the world still causes a lot of anxiety.
“It’s a test and it will remain so because it’s a baby. It couldn’t be otherwise,” says Ms. Mantha.
“It affects a lot of people, but we hear little about it,” she said.
Adding to the stress of the baby, some families have to travel hundreds of miles to get to the hospital, and mothers have to be separated from their other children for weeks or months.
In addition, Préma-Québec notes that society does not always understand the status of preterm infants and tends to give them less importance than other children.
“In public opinion, we often wash away the premature baby first, he has no status,” says Ms. Mantha. […] Parental love doesn’t come in different sizes.
Additionally, guilt is a feeling that inhabits many mothers who give birth prematurely. They find all sorts of reasons to explain the onset of labor, Préma-Québec notes.
“I made love”, “I passed the sweeper”: I’ve heard everything for 30 years, everything works,” complains Ms. Mantha. We can tell them it has nothing to do with it. They search and wonder what they did to deserve this.
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