My grandfather had an exceptional destiny from the very beginning of his life. Michel was born in July 1932, at home, like the majority of children at the time. What distinguishes him somewhat is that he was not born alone that day. Twice, the country doctor had to announce, devastated, that another baby was arriving. It was, therefore, three premature children, each weighing one kilo, who arrived, to everyone’s surprise.
The USA died the day after her birth. Michel and Andre spent several days between life and death. They were placed in shoe boxes, in cotton, by the fire lit 24 hours a day throughout the summer. Mustard rubs to help them breathe, small drops of milk regularly pipetted between the lips for any diet. Against all the odds, they gradually managed to regulate their temperature, eat, and gain weight. They later learned to walk, to speak. They went to school, learned to read, write and count. They found work, courted young women and got married the same day.
This story is that of a miracle of nature, which ultimately owed little to medicine. It was not until the 1960s that effective techniques of neonatal resuscitation and respiratory assistance became widespread. These advances were quickly accompanied by a meteoric increase in the chances of survival of children born prematurely, that is to say, before 37 weeks of gestation (or eight and a half months of pregnancy) according to the definition of the World Organization of health. So much so that today, according to the French study EPIPAGE-2, 52% of extremely premature babies (born at 22-26 weeks), 94% of very premature babies (born at 27-31 weeks) and 99% of moderate premature babies (born at 32-34 weeks) are discharged alive from the hospital, more often without sequelae.
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What impacts on health?
Whereas 60 years ago, a premature infant had almost no chance of getting out of it, he can now claim to live and grow normally. Globally, prematurity nevertheless remains one of the leading causes of death in children under five. And in those who survive, health problems are essential.
This is not surprising. Premature birth abruptly interrupts in utero development. All the organs are present but immature. The processes of growth and maturation of the organs, in particular of the brain, the lungs and the digestive system, must, therefore, continue under less optimal conditions than in the mother’s uterus. As a result, during the first weeks of life, immaturity linked to premature birth can lead to breathing or digestive difficulties, bleeding in the brain, or infections.
These complications can be transient or become chronic, especially in the case of bronchopulmonary dysplasia. Neurological sequelae are common, especially in very premature babies. They can manifest themselves as motor disturbances, with a delay in walking or difficulties in walking, cognitive disorders, with problems in oral or written language, or attention disorders and sensory, visual, or hearing disorders. Some studies have also noted a reduction in overall IQ scores, an increase in math and spelling difficulties, or a tendency to be less extroverted.
What consequences as an adult?
The first children to benefit from medical advances have now reached adulthood. These pre-term adults represent an increasing share of the population, due to the concomitant increase in the frequency of premature births ( now 1 in 10 births, i.e., 15 million babies each year worldwide and 60,000 in the USA) and survival rate. It is therefore essential to know more about the consequences of prematurity in adulthood, to identify the problems that diminish or persist throughout life, to investigate the factors associated with good results. and the interventions that we can offer.
While an overwhelming majority of adults born prematurely are in good health, a small proportion of them nevertheless have a higher risk of anxiety and depression, neurological and behavioral abnormalities, cardiopulmonary functional limitations, systemic hypertension and metabolic syndrome compared to their term-born counterparts. These health problems often develop at an earlier age than in the event of a full-term birth. For some researchers, prematurity could be considered a chronic disease. However, some functional limitations are not necessarily perceived as a problem by stakeholders, which translates into a tremendous capacity for resilience and adaptation.
In fact, prematurity can also have more unexpected consequences. Thus, adults born prematurely often have a different personality, which does not mean abnormal! They are described as more conscientious, cautious, pleasant, shy and less inclined to exhibit risky behaviors or addictions. This could partly explain why they are more frequently victims of harassment, or that they have more social difficulties, especially in their romantic and friendly relationships.
Many outstanding questions
Many of these results will need to be confirmed, and many questions remain unanswered. What, for example, is the effect of prematurity on aging? Does care at the time of birth have a long-term impact? What happens to adults born preterm in countries with limited resources? What is their contribution to our societies? What are the factors favoring their resilience? What is the quality of life for these adults? What is the influence of the family environment, genetic, socio-economic and lifestyle?
As we can see, there is still much to learn to understand better how to improve the long-term health and quality of life of these people and to be able to propose appropriate public health policies and educational actions. This can only be done with the combined efforts of researchers from around the world to analyze the data already available. But it is also essential to set up innovative studies.
Innovative studies to answer them
To clarify the effects of prematurity throughout life, several research projects are currently underway. The HAPP-e project (an acronym for “Health of Adult People born Preterm – an e-cohort study”) was launched in late 2019 by researchers from the Institute of Public Health at the University of Porto (Portugal), in partnership with Inserm and other European institutions and universities collaborating on another project, RECAP preterm.
The goal is to study the health of prematurely born adults on a large scale in a new way. We indeed wish to recruit and follow an electronic cohort (or e-cohort) of adults born before term. Recruitment and follow-up of participants will be done entirely using digital tools, in particular an Internet platform. Because by taking advantage of current technologies and communication methods, we will be able to reach diverse and geographically dispersed populations, who often do not have the opportunity to make their voices heard.
Let it be said: becoming a research actor by sharing your experience from your sofa has never been easier! So get the message out: all adults (18 or older) born prematurely are invited to participate in this study, wherever they are in the world, and to be HAPP-e! My grandfather would have loved to give such a boost to research…