Quebec should have a database to ensure better medical follow-up of premature children throughout their lives in order to better understand and prevent serious illnesses, believe several experts.
“In Quebec, we don’t have centralized data on prematurity,” denounces the deputy director of the Canadian Neonatal Network, Dr. Marc Beltempo. We have no idea what is happening with these children, seven or 10 years later, and how we can better offer services to be more effective in prevention. ”
“You can't improve what you don't measure,” also deplores the director general of Préma-Québec, Ginette Mantha, who wants to set up a excellence.
Ginette Mantha, Executive Director of Préma-Québec
Le Journal reported yesterdaythat premature children are born and grow up healthier than 15 years ago, due to advances in medicine. Each year, more than 6,000 babies (7% of births) are born before term, i.e. 37 weeks of pregnancy.
One thing is certain: very premature babies born each year in Quebec are more likely to develop all kinds of health problems (heart, lung, attention deficit, etc.)
Those born before 29 weeks are also nearly four times more likely to have an autism spectrum disorder, notes Dr Beltempo, who works as a neonatologist at the McGill University Health Center in Montreal.
The specialist believes that the province should set up a provincial registry, similar to those found in Ontario (called BORN) or British Columbia, where information is compiled.
“We would like to have data collected in the same way, to have better statistics,” says Ms. Mantha. But it takes time and money. In order for us to invest, premature babies must have a status, and it is not that great. »
“Once an adult, there is no real follow-up. There is a lack on that side, ”also notes the neonatologist at the Laval University Hospital Center in Quebec, Dr. Christine Drolet.
According to Dr Beltempo, all sorts of early screening could be put in place for very premature babies, once past the age of 50 for example.
“Y Are there things to watch out for cardiovascularly? Should screenings be done earlier than for the general population? asks the neonatologist. We need to know this in order to provide better health care. »
Speech therapy, occupational therapy, school delays: very premature babies also often have more needs at school.
“It's one thing to follow them and notice the delays, but you also have to have the resources to help and support them, these children. The more we advance, the more the resources crumble. That is difficult,” explains Dr. Drolet.
A subject that is still taboo in society
Even if more than 10,000 parents are closely affected by prematurity each year in Quebec, this ordeal is one of the most difficult to live with and remains taboo in society, according to Préma-Québec.
“The baby's health is one thing, but with everything that comes around, it's not bad, always difficult,” says the organization's executive director, Ginette Mantha.
“There are dads who have to go back to work, who call the crisis line crying, out of breath to support all this. We have them every week at the office,” says the woman who founded Préma-Québec in 2003, which helps parents of premature babies.
Great test  ;
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.
“C It's a test and it will remain so because it's a baby. It can't be otherwise,” says Ms. Mantha.
“It affects a lot of people, but we don't hear much about it,” she says.
In addition to the stress associated with the baby, some families have to travel hundreds of kilometers to get to the hospital, and mothers sometimes have to be separated from their other children for weeks or months.
Moreover, Préma-Québec notes that society does not always understand the status of premature babies, and tends to give him less importance than other children.
“In public opinion, we often flusher the premature baby first, he has no status, says Ms. Mantha. […] Parental love does not come in different magnitudes. »
Mothers feel guilty
Furthermore, guilt is a feeling that inhabits many mothers who give birth prematurely. They find all sorts of reasons to explain the onset of childbirth, notes Préma-Québec.
““I made love”, “I passed the sweeper”: I've heard everything for 30 years, everything goes, laments Ms. Mantha. We can tell them that it has nothing to do with it. They search and wonder what they did to deserve this. »
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Katrine Johns has been a reporter on the news desk since 2013. Before that she wrote about young adolescence and family dynamics for Styles and was the legal affairs correspondent for the Metro desk. Before joining The Gal Post, Katrine Johns worked as a staff writer at the Village Voice and a freelancer for Newsday, The Wall Street Journal, GQ and Mirabella. To get in touch, contact me through my firstname.lastname@example.org 1-800-268-7128