World Day of Perinatal Mourning: To break the taboo

(Montreal) That day in 2011, Marilou Bourassa and his spouse come home, unplug the phone and essentially cut themselves off from the world.

Jean-Benoit Legault
The Canadian Press

They are still shocked to learn that the baby she has been carrying for more than seven months, their first, suffers from multiple genetic problems: her cranial box is too small, her cerebral ventricles are too big, the length of the bones does not fit, his renal function is insufficient, his heart is weak …

The list seems endless.

"We are also told that several surgical procedures will have to be planned during the first days and weeks, a very strong medication, we are not sure that the baby will even be able to leave the hospital, in the medium term I am announced a child who may never be aware of us, who may not be able to swallow or have a sitting posture … so the case looks very heavy, "said M^me Bourassa.

The shock is all the more brutal since everything seemed to be going well during the last ultrasound, except perhaps the fact that the baby would probably be very small weight.

There is no question at this time of interrupting the pregnancy. The couple concludes that this is not the end of the world and examines how it will accommodate this "different" child in his life.

But everything changes when specialists tell her that the baby will need a heart transplant soon after birth.

"It was especially when we learned that the heart was weak and that it would take a short-term heart transplant that the chopper fell for us," said the young woman. You must know that it is extremely rare to have access to organs for babies born, especially since we, with the diagnosis of genetic translocation, between a healthy baby and ours who is born already mortgaged, we do not would have never been chosen as receivers. "

The pregnancy is finally interrupted during the eighth month.

Perinatal mourning

"It's a special paradox to want to give life and finally give death. It is extremely difficult and it is of infinite sadness. It's pretty brutal, it's heartbreaking, "said Johanne Martel, an expert at the CHU Sainte-Justine to whom La Presse canadienne spoke on the occasion of World Perinatal Mourning Day, October 15.

On its own, the large Montreal pediatric hospital last year recorded 315 infant deaths that occurred between the first day of conception and the end of the first month of life, nearly one per day.

"It's a life project, having a child, and when it stops so abruptly, it's really a shock and a trauma that you have to be able to recognize," she added.

It is impossible to quantify the intensity of the sentence felt by the couple and their relatives, continues M^me Martel. It is wrong to think that the mourning of a 40 year old woman who was finally at first pregnancy after years of attempts will be more intense than that of a 22 year old woman who will have other opportunities to be pregnant.

"I can tell you from experience that it's as difficult to lose a baby at ten weeks of pregnancy as at 24, that at 32 … the punishment is immense," warned M^me Martel. The best thing you can do is to be there and listen, to give them an opportunity to talk about it. Parents will not talk about it right away because they are afraid to annoy people around them with that. So if we are kind enough to come forward and say, "I'm sorry, I know you lost your baby, do you feel like talking about it? "And there you will see that it will break. "

Parents who experience such an ordeal demonstrate remarkable courage and resilience, and undergo a transformation that M^me Martel calls them "spectacular": their values ​​change, priorities are put back to the right place, and their lives will never be the same again.

"What parents are most afraid of is that we forget the birth of this child," said M^me Martel. If we have a thought for the baby, for example by hearing a song or a poem, do not hesitate to tell the parents, because it gives them great pleasure to see that there are still people who think about their child. "

The eldest of the family

"His name is Joa-Kim," answers M^me Bourassa when asked what name they chose for their baby.

His name is, in the present, and not his name, in the past.

Her husband survived this ordeal, and she and her husband had two other children "with great happiness": a little girl who is now six years old and a little boy who has three.

At the funeral of Joa-Kim, M^me Bourassa had read a letter in which she pledged to always recognize him as the eldest of his family. And as soon as her daughter was able to understand, she told him about Joa-Kim as "a person whose existence makes me a better person".

The family has placed a child-friendly box in the living room where the baby's belongings are found "to break the taboo of not talking about a dead baby".

"It was a baby of light throughout this pregnancy, and after that it becomes again the baby of light that we had in ourselves, but there it has migrated to the heart," concluded M^me Bourassa.

>> Visit the site of CHU Sainte-Justine