Forum ASBL Nos Enfants Cardiaques


 

[ Topic : tronc artériel commun info ]
Sujet : tronc artériel commun info Date : 21/07/2005, 17H38

Auteur :
charlinexavier
je suis actuellement enceinte de 6 mois 1/2 et le papa et moi venons d'apprendre que notre BB est atteint d'une malformation cardiaque grave:tronc artériel commun et communication inter-ventriculaire. le spécialiste nous a parlé d'opérations:la 1° se fearit dans les 1°semaines ou mois suivant la naissance.On m'a également fait une amniocentèse car la malformation pourrait être liée à une anomalie chromosomique,on attend les résultats dans 2 semaines.On aimerait discuter avec des personnes ayant vécues cela afin de nous aider dans notre décision.nous sommes perdus et avons besoin de soutien.Merci d'avanceconfus
Sujet : Re : tronc artériel commun Date : 02/08/2005, 14H36
Auteur :
mamanerika
hello
Bonjour a vous,
je viens de lire votre message et je me sens concernée car j'ai vécu la même chose. (Je suis maman d'1 petite fille de 2ans1/2 qui a des probs cardiaques)
Au moment de l'écho morpho le gynéco a vu que quelque chose ne tournait pas rond pour le coeur du bébé et il m'a aussi proposé une amniopour vois s'i n'y avait pas aussi un prob génétique.
3 semaines d'attentes pour les résultats c'est long!!!
Les résultats sont arrivés et j'ai appris que mon bébé etait atteint du syndrôme de turner(cela ne touche que les filles) en plus de prob cardiaques (rétrecissement de l'aorte et sténose de la valve aotrique). Pour le prob génétique on m'a tout bien expliqué a St Luc et on m'a dit qu'elle n'aurais pas de retard moteur ou psychologique mais que ce serait principalement un prob de croissance qui se manifesterait vraisemblablement vers l'âge de 3-4ans. Et pour le coté cardiaque on m'a dit que tout était réparable. Nous avons donc fait le choix de garder bébé et aujourd'hui on ne regrette rien c'est une enfant pleine de vie.
Si vous souhaitez de plus amples informations sur notre parcours n'hésitez pas à prendre contact par mail et si vous le désirez je vous transmettrais mes coordonnées pour répondre a vos questions si je peux vous aider.
Je suis vraiment de tout coeur avec vous et espère avoir de vos nouvelles très vite.

sylvie

Profil membre
Sujet : Re : tronc artériel commun Date : 02/08/2005, 18H47
Auteur :
charlinexavier
Merci beaucoup!
Les résultats de l'amniocentèse n'ont révélé aucune autre anomalie.
Le médecin nous a expliqué que la malformation cardiaque était grave.
Nous avons décidé de garder le BB.Mais je suis morte de trouille quand je repense aux opérations.Le médecin nous a dit que cela ne marchait pas à tous les coups mais on reste confiant...
J'ai du mal à écouter ce que peuvent dire les gens(famille) autour de nous:quand ils nous parlent du coté "financier" par exemple je n'arrive pas à m'y intéresser.Je ne pense qu'aux risques opératoires et le reste me paraît si lointain...
J'attend un RDV dans le centre qui va prendre en charge mon accouchement et l'opération de notre BB.J'aurais enfin toutes les réponses à mes questions...
Je suis en plein déménagement alors cela m'aide à penser à autre chose mais en fin de journée j'ai un peu le cafard(heureusement le futur papa reste confiant).
a bientôt j'espère
Charline
Sujet : Re : tronc artériel commun Date : 05/08/2005, 14H00
Auteur :
mamanerika
Je suis vraiment de tout coeur avec vous et je pense que le papa a raison d'être confiant c'est déjà un bon début pour vous aidez à franchir ces moments difficiles. C'est vrai qu'il faut savoir qu'il y a des risques mais la moindre petite intervention même banale comporte des risques. Je suis sure que tout se passera bien. Profitez un maximum de votre grossesse et quand bébé sera né profitez-en aussi autant que vous pouvez sans penser au lendemain. Je vous souhaite vraiment plein de courage et si vous cherchez du réconfort ou une oreille attentive pour répondre a vos questions n'hésitez pas je suis là.
Je suis passée par là et je sais par quel moment d'angoisse vous passez mais surtout n'hésitez pas.
Amicalement

sylvie

Profil membre
Sujet : Re : tronc artériel commun Date : 22/07/2008, 14H19
Auteur :
joanna
Bonjour, nous avons un fils de 21 moins avec un tronc artériel commun de type II. Il a été opéré à 15j de vie et il est en pleine forme. Personne ne sait dire qu'il est atteint d'un malformation. Il devra se faire réopérer entre l'age de 2 ans et 8 ans selon l'évolution pour remplacer sa valve "synthétique " par une valve "humaine" qui grandira avec son corps. La 2eme opératio est moins grave car se sera à coeur battant et non plus à coeur ouvert. Nous avons été pris en charge à l'HUDERF de Bruxelles, ils font des miracles !!! Bonne chance et bcp de courage, mais tout se passera bien et vous vivrez des moments magiques après tout cela.
Sujet : Re : tronc art¨¦riel commun Date : 10/07/2015, 05H57
Auteur :
reteryerd
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Sujet : Re : tronc art¨¦riel commun Date : 08/12/2016, 04H45
Auteur :
cpp
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www.michaelkors.so/
Sujet : Re : tronc art¨¦riel commun Date : 24/04/2017, 12H14
Auteur :
whn 123
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whn
Sujet : Re : tronc art¨¦riel commun Date : 17/10/2017, 20H41

Auteur :
amyk0904
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: le topic (sujet) de discution




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