Forum ASBL Nos Enfants Cardiaques


 

[ Topic : Ebstein ]
Sujet : Ebstein Date : 04/10/2004, 09H49
Auteur :
Maryse & Didier
Bonjours à tous,

Après les 8 jours critiques post natale en Août 2004, la nature a décidé que Cathleen vivrait. Son état s'est amélioré ou plutôt son organisme s'est adapté à la malformation. Nous avons mené une vie normale pendant près de 3 semaines. Nous avons même passé 3 jours de vacances à la mer pour enfin se retrouver et expulser un peu de stress. La visite des 3 semaines a révélé un état stable avec un taux de saturation au-dessus de la moyenne pour un Ebstein.
La dernière visite (1 mois après) est encore plus encourageante. Le taux de saturation est de 91% et ce malgré un Ebstein considéré sévère sur le plan anatomique. Sur le plan physiologique, si l'on ne savait rien on ne le remarquerait pas. Il n'y a pas d'opération prévue tant que l'organisme ne montre pas de faiblesse. Les médecins ne veulent pas la revoir avant janvier 2005 après les fêtes. Elle devient donc un "cas clinique intéressant" selon leur jargon.
Nous souhaitons que les choses se passent aussi bien pour vos enfants. Une chose est sur, gardez espoir, aimez les, agissez normalement.
Nous vous remercions encore pour vos messages de soutient et vous ferons part de la suite.

Maryse et Didier
Sujet : Re : Ebstein Date : 02/01/2007, 00H37
Auteur :
panpan
bonjour, ma fille manuella est née en 1998 avec une maladie d'ebstein, avec une saturation de 70% elle a passé le cap des quinzes jours.
à neuf mois, elle a été opéré, il ont relié la veine cave supérieure à l'artère pulmonaire.
la saturation en oxigène est passé à 85%.
elle a aujourd'hui 8 ans le cardiologue nous a annoncé qu'elle dreva être opéré en 2007 pour placer une valve artificielle.
Sujet : Re : Ebstein Date : 17/07/2009, 14H48
Auteur :
furaxland
Bonjour, je suis la maman d'une petite fille de 3 mois et demi atteinte aussi d'une malformation d'ebstein.
Passé l'angoisse de la naissance et des premiers jours, notre petite puce n'a cessé de montré qu'elle avait la force de vivre sans problème. Elle a eu un controle cardio a 2 mois et demi et la cardio pédiatre ne souhaite nous revoir que dans 1 an et en attendant elle nous a conseillé une vie entièrement normale.

Ce mesage juste pour dire que je partage vos situations et surtout n'oublions jamais que nos bébés sont étonnemment forts et tellement surprenants dans leur faculté d'adpatation.
Pour info ma fille a une malformation importante sur le plan anatomique mais elle la tolère parfaitement bien et c'est même un bébé tout rose et qui devient toute rouge en se fachant et pas toute bleue lol.

J'espère que vous êtes capables, comme je le suis maintenant, d'oublier au quotidien la pathologie cardiaque.
Sujet : Re : Ebstein Date : 19/07/2009, 16H55
Auteur :
mamanalice
bonjour
merci pour votre message et vos encouragements.

j'ai mis votre message sur le nouveau forum
www.nosenfantscardiaques.be/index.php?option=com_kunena&Itemid=88&func=latest

à bientôt



maman d'Alice

Profil membre
Sujet : Re : Ebstein Date : 08/12/2016, 06H19
Auteur :
cpp
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www.michaelkors.so/
Sujet : Re : Ebstein Date : 24/04/2017, 11H47
Auteur :
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