Natasha St-Pierre: "I just spent the hardest year of my life"

Paris Match. A cinq mois de grossesse, vous avez appris que votre enfant était atteint d’une maladie cardiaque, quelle a été votre réaction ?Natasha St-Pier. Je ne me suis pas inquiétée tant que ça. En fait, j’ai une cousine qui a une malformation cardiaque et qui vit très bien, donc je n’ai pas vraiment réalisé. Mais quand le médecin m’a annoncé que mon enfant avait une tétralogie de Fallot, il a ajouté que cela s’accompagnait parfois d’une maladie chromosomique. C’est ce qui m’a fait le plus peur. Et puis, il y a eu des moments de doute. Juste après l’annonce de la maladie, je partais au Canada pour une promo et j’ai passé une journée complète à répondre aux journalistes. Comme j’étais enceinte, et que ça se voyait, tout le monde me demandait : «Alors c’est une fille ou un garçon ?» Je répondais que cela n’avait pas d’importance pour moi. Tous me disaient : «Tant qu’il a la santé, tout est beau !» C’était dur, parce que je savais déjà que mon bébé n’avait pas la santé. Alors j’ai eu une réaction bizarre, j’ai appelé mon mari et je lui ai dit qu’il fallait absolument qu’on décide de son prénom. Parce que cela voulait dire qu’il existait. On s’est mis d’accord sur Bixente, ce soir-là. C’était obligatoire.

Pendant les quatre derniers mois de grossesse, comment vous êtes vous préparée à l’accouchement ?A sept mois de grossesse, j’ai su qu’il n’y avait pas de problème chromosomique, j’étais presque soulagée.I was followed and as his heart disease was diagnosed "in utero", I knew that I would give the Necker hospital, that my baby would be immediately taken care of.The only question was whether I could take it in my arms, at the time of childbirth.

Finalement, vous avez pu le prendre dans vos bras ?L’accouchement s’est très bien passé, j’ai pu le prendre dans mes bras les premières minutes, puis le médecin Fanny Bajolle l’a emmené pour lui faire une échographie.We were lucky, we were able to go home with Bixente.It was not operated on from birth, to grow before the open heart operation.

Bixente was therefore operated at 4 months.Exactly.The day before the operation, we arrived at Necker hospital with my husband and I stayed alone with Bixente for the night.My husband left with all his things, his stroller, his clothes.It was that night that was the most delicate for me.Because it may be the last with my baby.Because the operation has risks.I did not sleep from the night of course, and I thought that I did not even have a coat for Bixente, to bring him home the day after the operation.In the morning, with my husband, we went to place it until the entrance to the block and we left him in the arms of a nurse.The operation lasted four hours.The doctors told us not to stay in the hospital, where time passes more slowly.So we got home - we still lived in Paris - but we couldn't stay in the living room to wait.So we did a very stupid thing, but who occupied us: my husband needed a new battery for his scooter, we went to buy it.But I was impatiently waiting for the phone call from the surgeon's secretary.She gave us an appointment at 1 p.m. at the hospital.The surgeon explained to us that everything had gone well and I was able to go see my son, in intensive care.He was immersed in an artificial coma, for 12 hours, so as not to feel the pain.Bixente is a very strong little-good and he got back quickly.We were lucky.

Depuis, vous avez retrouvé une vie normale ?Pendant les quatre premiers mois de sa vie, je pensais que j’étais une maman normale, je pensais qu’on avait une vie normale.We gave him the bath, we were going to walk, we took photos, which we sent to family and friends.We were convinced to live normally.But two days after the operation, he chirped in the hospital room and we said to ourselves: "You know what, he has no toys".Unconsciously, we had never bought him toys, because we didn't know if he was going to live or not.In fact, we lived in parentheses, saying to ourselves "maybe we were offered four months with a baby, let's take advantage of it, maybe he will disappear after".Today, even if he was sick, that does not define him.If he makes nonsense, he will be punished, even if I am a mother hen.I thought I would be a strict mother, but no.I had always been told, "You will see, being a parent changes everything".I didn't believe it too much, but indeed, it totally changed my vision of life.

Aujourd’hui, Bixente est guéri ?Il est considéré «cure complète», c’est ce que le médecin a écrit sur son bilan de santé.We are one of the lucky parents.Today he's a normal little boy, he can play sports, he can do anything.He just has a visit with the cardiologist every year.But there is no reason for him to have a heart problem, no more than me or anyone.

We imagine the relief.I just spent the hardest year of my life.But we do not realize how strong we are, as long as we are not confronted with the trials.We went through all of this ... well, actually.With each new test, we faced.

Since the birth of your son, you have told your journey, the hospital, the operations on social networks. Pourquoi ?A cause de la solitude à l’hôpital.When we have good news, out of modesty, we dare not tell other parents in the service, because we do not know what test they are going through.And when we have bad news, we cry alone and you have the impression that everything is fine for them.I wanted to show that we are not alone: "You see, I am a singer but it happens exactly the same thing for me."And that's what I want to show with the association" little heart of butter ".

One in 100 children is born with heart disease

Indeed, since then, you have been the godmother of "little heart of butter".In fact, I met Professor Damien Bonnet at the Necker Hospital, who is the president of the Arcfa (Association for Cardiology Research from the Fetus to the adult), created by doctors for research.He told me about "little butter heart", which is an association for families of children with heart disease.The goal is to improve the quality of life of these children when they are in the hospital, but also of their parents, for all the small details of which we do not think but which are important.Like the mother-child rooms, for example, there are not intensive care.We also want to improve the quality of life of caregivers, because when nurses are good, they are even better for our children.For example, we redid the intensive care rest room which was very old.

Quelles sont les actions de «Petit Cœur de Beurre» ?«Petit Cœur de Beurre» et l’ARCFA agissent ensemble, pour faire le lien entre les familles et l’hôpital.For example, we created a small book for parents when they manage to Necker.We organize charitable evenings to collect donations, which are necessary for research, to diagnose these cardiac malformations as soon as possible, even "in utero" as was the case for me, but also to eradicate certain pathologies.There is an atrocious statistic: one in 100 children is born with heart disease.It is enormous.To give an example, there are many more people with heart disease than cystic fibrosis.But heart disease, in most cases, is curable - and that's good - the problem is that there is not enough money for research.It's horrible to say, but there are not enough deaths, so not enough gifts.