Better follow-up is called for for premature babies

Quebec should equip itself with 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.

• Read also: Small miracles of medicine: healthier premature babies

• Read also: Small miracles of medicine: a miraculous and tragic story at the same time

“In Quebec, we do not have centralized data on prematurity,” denounces the deputy director of the Canadian Neonatal Network, Dr.^r Marc Beltempo. We have no idea what is happening with these children, seven or 10 years later, and how better services can be offered 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 center of excellence.

The newspaper reported yesterday that premature babies 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) arrive in the world 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.)

Autism

Those born before 29 weeks are also nearly four times more likely to have autism spectrum disorder, notes Dr.^r 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 in British Columbia, where information is compiled.

“We would like to have data collected in the same way, to have better statistics,” says M.^me Mantha. But it takes time and money. 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, D^D Christine Drolet.

Early detection

According to the D^r Beltempo, all sorts of early screening could be set up for very premature babies, once past the age of 50 for example.

“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 see 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 the D^D Funny.

A taboo subject 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,” notes 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.

big 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.

“It’s a test and it will remain so because it’s a baby. It can’t be otherwise,” says M.^me Mantha.

“It affects a lot of people, but we hear little about it,” she says.

In addition to the stress of the baby, some families have to travel hundreds of miles to get to the hospital, and mothers may 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 them less importance than other children.

“In public opinion, we often go flush premature baby first, he has no status, says M^me Mantha. […] Parental love does not come in different magnitudes. »

mothers blame

Moreover, 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 have heard everything for 30 years, everything goes, laments M^me Mantha. We can tell them that it has nothing to do with it. They search and wonder what they did to deserve this. »