Forum ASBL Nos Enfants Cardiaques


 

[ Topic : Problèmes cardiaques info ]
Sujet : Problèmes cardiaques info Date : 27/03/2008, 15H01
Auteur :
Elomelanore
Bonjour,

Je vais essayer d'expliquer au mieux le soucis cardiaque d'Eléanore...

Notre puce a un VDDI (Ventricule Droit à Double Issue) avec un TGV (Transposition des Gros Vaisseauwobble, une CIV (Communication Inter Ventriculaire), dysplasie tricuspide, une sténose sous valvulaire pulmonaire et il y a un déficit en facteurs intrinsèques de la coagulation (VIII, IX, XI ET XII).

Elle a été opérée à 4 jours d'un shunt. Ella a aujourd'hui 11 mois, elle devait déjà avoir sa seconde opération mais étant donné que la satu est bonne ils préfèrent patienter.

Elle a subi à 4 mois un cathé, maintenant nous allons lui faire un cathé interventionnel car elle a une sténose au niveau de l'artère pulmonaire du à son shunt. Je commence à paniquer malgré que je sais ce qu'est un cathé, mais bon... Elle va subir malgré tout sa 3ème anesthésie.

Quelqu'un peut il me dire si ils sont déjà passé par là et m'expliquer un petit peu leur chemin ?

Merci confus
Sujet : Re : Problèmes cardiaques Date : 06/04/2008, 18H06
Auteur :
Do03
hello...

Je suis la maman de Flavio qui a maintenant 16 mois.. Nous avons découvert lors de mon 6ième mois de grossesse qu'il avait une malformation cardiaque complexe apellée "Double discordance" + CIV + sténose pulmonaire + dextrocardie.. triste
D'un 1er avis médical à Liège, nous ne pouvions lui donner une vie acceptable et il était préférable de subir une IMG.. Du 2ième avis à St Luc (Dct Barréa et l'équipe de cardiologie)), il en est resorti que c'était possible mais en plusieurs temps..
C'est ainsi que Flavio a vu le jour le 29 novembre 2006 et qu'il a subi sa 1ère intervention (un shunt de Blalock) le 4 décembre 2006, soit 5 jours après sa naissance..
A 3 mois et demi, nous nous sommas aperçu que sa saturation avait fortement chuté et qu'il fallait intervenir.. Le Dct Moniotte lui a fait un cathé (pour élargir son AP) qui ne s'est pas passé sans mal puisqu'il est resté 5 heures en salle de cathé..triste
Vers ses 11 mois, il a dû être réopéré suite à une conséquence du cathé: un fistule s'était formé entre la veine et l'artère fémorale.. C'était se 3ième anesthésie..
Début février, sa saturation a de nouveau chuté et il a eu sa 3ième intervention cardiaque (2ième shunt de Blalock) mais 4ième anesthésie..

Nous devrions logiquement être tranquille pour quelques années.. Il aurau son intervention correctrice entre l'âge de 4 et 6ans..

Si vous avez d'autres questions, n'hésitez pas..

Dorothée, maman de Flavio..
Sujet : Re : Problèmes cardiaques Date : 07/04/2008, 21H04
Auteur :
mamanalice
bonjour
je suis la maman d'Alice qui a presque 7 ans. Voilà un peu notre histoire.
A six mois de grossesse on a découvert un ventricule unique, une atrésie pulmonaire, pas de veine cave inférieure une communication intra auriculaire, etc....Je passe ici les horreurs que nous avons entendu à St Luc par la responsable en gynécologie: pas viable, pas d'estomac, trisomie....
Heureusement le professeur Sluysmans en 10 minutes nous a rassuré et a décrit assez fidèlement ses malformations qui pouvaient être prises en charge par chirurgie.
A 6 jours elle a été opérée d'un shunt de Blalock, 6 mois plus tard elle a eu une première grosse intervention.
Puis à 20 mois après un cathé elle a subit l'intervention appelée Kawashima et on lui a posé un pacemaker. Sa saturation restait basse (85%) mais Alice tolérait bien cela.
Enfin à l'âge de 4 ans, elle a encore eu une grosse intervention après un cathé qui montrait des fistules artério-veineuses.
A ce stade je ne compte plus les anesthésies....d'autant plus qu'à sa première carie on a sérieusement envisagé une anesthésie générale pour soigner les dents. Cela n'a pas été nécessaire heureusement car les caries étaient superficielles d'une part et que d'autre part Alice se laissait parfaitement soigner.

Par rapport à notre vécu, j'ai toujours vécu les cathé avec appréhension. Ils nous annonçaient de mauvaises nouvelles. Par contre, les anesthésies, en soit, ça allait.
Une petite anecdote à ce propos: nous avons un petit garçon qui a des problèmes d'otites perforées. Notre ORL a pris des gants pour nous annoncer que des drains tympaniques seraient nécessaires (anesthésie générale de 2 minutes). Et bien après des interventions cardiaques c'était presque une bonne nouvelle!

Aujourd'hui nous sommes dans une phase de repos. tout ça est un peu derrière nous. Depuis 2005, tout roule. Je touche du bois! Alice participe à toutes les activités à l'école, et elle est très épanouie.

Aussi, je vous envoie plein de courage !!
à bientôt

maman d'Alice

Profil membre
Sujet : Re : Probl¨¨mes cardiaques Date : 10/07/2015, 07H32
Auteur :
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Sujet : Re : Probl¨¨mes cardiaques Date : 08/12/2016, 04H41
Auteur :
cpp
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www.michaelkors.so/
Sujet : Re : Probl¨¨mes cardiaques Date : 24/04/2017, 12H19
Auteur :
whn 123
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