Forum ASBL Nos Enfants Cardiaques


 

[ Topic : Coarctation de l'aorte ]
Sujet : Coarctation de l'aorte Date : 01/10/2004, 17H21
Auteur :
IsabelleetJustin
Bonjour,

Je me présente. Je m'appelle Isabelle et j'ai 4 enfants. J'ai deux filles de 7 et 5 ans. Mes petits derniers ont 15 mois et sont des petits jumeaux.

Je viens d'apprendre cette semaine que mon petit Justin (15 mois) a une coarctataion de l'aorte et qu'il devra être opéré. On ne sait pas quand. Le cardiologue va le suivre aux 6 mois et décidera quand ça sera le temps de faire l'opération. Pour l'instant, il est asymptomatique mis à part une respiration plus rapide et un faible pouls fémoral. Il a aussi tendance à avoir les extrémités bleutées s'il a froid mais sans plus. Son petit coeur est fort et compense bien.

Inutile de vous dire que je suis quand même un peu inquiète. Je suis infirmière, donc je comprend assez bien le côté medical, mais je me cherche du support. J'aimerais parler avec d'autres parents donc un enfant a subi avec succès la même intervention. Merci!
Sujet : Re : Coarctation de l'aorte Date : 02/10/2004, 07H13
Auteur :
geny
Bonjour,
C'est un message d'espoir que je veux vous livrer. Je suis née avec une malformation cardiaque une CIA diagnostiquée quand j'étais bébé. J'ai été opérée à coeur ouvert à l'âge de 5 ans­. Avant l'opération, je n'avais pas de symptomes mais mon petit coeur travaillait plus fort que les autres. Il fallait faire attention car j'ai plus sujette aux grippes et aux infections que les autre enfants. À part ça je vivais normalement. J'ai eu une enfance normale quoique je me suis toujours essoufflée rapidement. J'ai 28 ans aujourd'hui et je mène une vie normale. Votre petit bonhome est fort, il pourra s'en sortir et vivre une vie heureuse. Je vous souhaite bonne chance.

Geny
Sujet : Re : Coarctation de l'aorte Date : 15/11/2004, 20H19
Auteur :
lisaemlu
bonjour,
notre petite Emma est née avec une coarctation critique de l'aorte et une CIV large en novembre 2000. Nous avions à l'époque deux autres enfants de 1.5 et 3 ans. On n'avait rien décelé lors du séjour à la maternité et à 5 jours (sortie de la maternité) son coeur était complètement décompensé et elle a fait un premier malaise le soir ...Emma a du être opérée à 8 jours de la coarctation à Liège. L'opération s'est très bien passée, le sevrage au respirateur a été difficile (mais c'était surtout à cause de son état au moment de l'opération et puis elle avait toujours sa CIV).
la CIV a été refermée à St Luc quand Emma avait 3 mois et après cela, elle a commencé a manger normalement, à respirer facilement et à grossir. Elle vient d'avoir 4 ans et est en deuxième maternelle. Elle nage, fait du ski en hiver, va à l'école de cirque et est en vrai petit clown, qui fait rire toute la famille. Elle est toujours de bonne humeur et a de l'énergie à revendre.
Elle est suivie par son cardiologue pour vérifier e.a. qu'il n'y a pas de recoarctation. La dernière visite a eu lieu la semaine dernière et tout va bien : pas de recoarctation, plus rien ne passe là où il y avait la CIV, sa tension artérielle est tout à fait normale. Prochain RDV dans 2 ans !!!
Je vous souhaite tout le bonheur du monde avec votre petit bout, croyez très fort en lui, ces enfants là ont une force incroyable !! Catherine
Sujet : Re : Coarctation de l'aorte Date : 20/01/2006, 12H35
Auteur :
louliou
bonjour je m appelle willy et j ai 23 ans j ai etait oppere a 8 mois d une malformation de la coartation de l aorte et je vais tres bien a par que je viens d aprendre que dans 6 mois il faut qu on me reopere a coeur ouvert toujours a cause de cette aorte qui et trop petite donc je vais avoir un tuyau en plastique afin d evacuer mon sang plus rapidement j ai un peu peur mais ce qui me rassure c est que c est un grand chirurgien sur paris qui va me le faire
Sujet : Re : Coarctation de l'aorte Date : 29/02/2008, 10H21
Auteur :
olivesan
Bonjour, mon petit garçon âgé maintenant de presque 4 mois a été opéré d'une TGV + coarctation de l'aorte à l'âge de 10 jours. Tout s'est très bien si je puis dire car c'est très lourd à supporter en tant que parent .... nous venons de voir lors d'un contrôle que son aorte réparée (coarctation) ne laisse pas suffisamment passer le sang au niveau de la crosse (bas du cou). Il est prévu de lui faire un angioscanner le 07 mars pour visualiser l'obstacle et si besoin il faudra qu'il subisse encore un cathétérisme avec anesthésie générale et tout le tralala ... on croit que tout est rentré dans l'ordre et les ennuis continuent ... merci de me contacter si quelqu'un a eut le même cas ... merci.

Une maman désespérée ....

Comment va le petit Justin maintenant ?
Sujet : Re : Coarctation de l'aorte Date : 17/05/2008, 23H05
Auteur :
Lili11
Bonjour,

Nous avons détecté une CIV à notre futur petite fille il y a 6 semaines. Après une amiosynthèse et une première viste chez un cardio à la Cita à Liège, nous avons décidé de prendre rdv à St-Luc.
Là le Dr Barrea nous a confirmé la CIV mais parle également de probable coarctation de l'aorte. Ce qui veut dire, un accouchement sur BXlles et sans doute une opération dès les premiers jours. Nous sommes en pleine digestion de ces nvlles et très inquiet par les futur étapes qui nous attende. Nous hésitons encore entre St-luc et Brugman pour l'opération. Toutes réactions et commentaires sont les bienvenus... Merci


Rv

Profil membre
Sujet : Re : Coarctation de l'aorte Date : 19/05/2008, 12H59
Auteur :
Layla
Bonjour Lilly,
Ma fille s'est fait opérée a Brugmann (Hopital des enfants) je peux vous envoyer le feedback que j'avais envoyé à l'hopital. Cela ne reflète que notre experience, je ne peux pas certifier que ce soit general.Envoyez moi votre email et je vous enverrai le document.
Nous vous souhaitons beaucoup de courage
Layla
Sujet : Re : Coarctation de l'aorte Date : 19/05/2008, 22H02
Auteur :
lili11
Bonjour Layla,

Ca fait plaisir d'entendre de bonne expérience comme la tienne. Voici mon e-mail: hfedsose@jacbe.jnj.com (je sais c'est complx!!!).
Merci d'avance.

Rv

Rv

Profil membre
Sujet : Re : Coarctation de l'aorte Date : 10/06/2008, 12H29
Auteur :
mamanerika
Bonjour,

je comprend vos angoisses et vos questions. Je suis passée par là, il y a 5 ans avec ma petite puce.
Nos histoires sont similaires, car moi aussi on m'a annoncé avantla naissance qu'il y aurait très rapidement une opération.
Cela a été réalisé à Saint-Luc et tout c'est bien passé.
Si vous avez des questions ou que vous souhaiter en parler plus longuement, je suis à votre disposition à l'adresse mail sylvievanschoorisse@hotmail.com
N'hésitez pas à me contacter.


sylvie

Profil membre
Sujet : Re : Coarctation de l'aorte Date : 20/06/2008, 21H18
Auteur :
olivesan
Bonjour,

Mon petit garçon s'est fait opérer de sa transposition des gros vaisseaux et de sa coarctation de l'aorte à L'hôpital d'Hautepierre (Strasbourg) et ils sont très compétents !

Les médecins font des miracles, je leur doit beaucoup !
Sujet : Re : Coarctation de l'aorte Date : 10/07/2015, 07H33
Auteur :
fgfdh
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Sujet : Re : Coarctation de l'aorte Date : 08/12/2016, 04H38
Auteur :
cpp
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www.michaelkors.so/
Sujet : Re : Coarctation de l'aorte Date : 24/04/2017, 12H21
Auteur :
whn 123
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That the generous palm of www.burberry-outlets.net.co/ the www.hollisterclothingstore.org/ master a www.co-aol.com/ look www.christianlouboutin-shoes.ca/ Lu Xiao www.roshe-run.co.uk/ frown will http://thunder.nba-jersey.com/ be embarrassed www.asicsoutlet.us.org/ scratching www.long-champoutlet.com/ his www.toms--outlet.com.co/ head, blushing, said: "ah, http://steelers.nfljersey.us.com/ the classmates http://spurs.nba-jersey.com/ embarrassed, I http://warriors.nba-jersey.com/ shot www.converses-outlet.com/ may not be important, www.burberrys-outletonline.com/ students should www.mk-outletonline.us/ not www.polos-outlets.com/ be surprised." http://mavericks.nba-jersey.com/ Lu Xiao www.true-religions.com/ looked www.oakleysoutlet.it/ up in http://76ers.nba-jersey.com/ front http://michaelkors.euro-us.net/ of this Boy, www.philipp-plein.us.com/ keep www.timberland-boots.com.co/ a www.timberlandshoes.net.co/ clean short hair, www.toms-shoe.us.org/ about one www.scarpehogans.it/ meter http://giants.nfljersey.us.com/ more than eight of www.soft-ballbats.com/ the www.outlet-burberry.net/ height, correct http://celtics.nba-jersey.com/ facial features www.coach-outlet.store/ give www.toms-shoes-outlet.us/ a www.air-huaracheshoes.co.uk/ sunny cheerful feeling. www.pulseraspandora.com.es/ The www.prada-shoes.com.co/ first http://hawks.nba-jersey.com/ impression is pretty http://redskins.nfljersey.us.com/ good. Looking at http://vikings.nfljersey.us.com/ Lu www.juicycouture.com.co/ Xiao www.designer-handbags.cc/ looked at www.michaelkorsoutletonline.net.co/ themselves, http://raiders.nfljersey.us.com/ the www.puma-shoesoutlet.com/ boy blushed www.oakleysunglasses-canada.ca/ to continue http://jaguars.nfljersey.us.com/ to say: "with www.nba-shoes.com/ the students if you www.valentino-shoesoutlet.us.com/ do http://bears.nfljersey.us.com/ not www.burberry-bags.net/ feel www.tnf-jackets.us/ ... www.basketballshoes.com.co/ not www.woolrich-clearance.com/ comfortable www.under-armouroutlet.com/ ... www.instylers.us/ can www.oakley-sunglasses.mex.com/ shoot http://panthers.nfljersey.us.com/ me." http://clippers.nba-jersey.com/ While www.michael-kors.cc/ talking, the www.nike-store.dk/ boy www.poloralphlaurenoutlet.net.co/ turned around His back www.christianlouboutin.org.uk/ against the www.p90xs-workout.com/ land Xiao. Well, www.truereligion-outlet.us.org/ more than http://saints.nfljersey.us.com/ a www.oakley-outletonline.com.co/ trace of www.raybans.org.es/ silly. Lu www.burberry-store.com/ Xiao www.levisjeans.com.co/ on www.bcbg-dresses.net/ his first impression www.michaelkors-store.us.org/ of a www.toms-outletonline.com.co/ more evaluation. http://pacers.nba-jersey.com/ "No, www.nikefree5.net/ what www.celine-bags.com/ do you www.nikeshoes-outlet.com/ have for www.nike-air-max.com.au/ your classmates?" Lu www.ralphs-laurenpolo.co.uk/ Xiao said www.truereligion-outlet.com.co/ with a smile. www.jimmy-chooshoes.com/ Heard www.prada.com.de/ Lu Xiao to answer www.nike-air-max.com.de/ themselves, the www.christian-louboutinshoes.in.net/ boy smiled www.pandorajewellery.com.au/ and www.christianlouboutinshoesoutlet.org/ scratched his www.ralphlaurenonlineshop.de/ head: www.soccers-shoes.net/ "There www.newoutletonlinemall.com/ is www.omega-watches.com.co/ nothing, I have www.oakley.com.de/ just www.polos-ralphlauren.com.co/ heard www.marc-jacobs.us.com/ the instructor assigned to www.dsquared2s.com/ you http://coach.blackofriday.com/ to www.hollisteronlineshop.com.de/ the http://rayban.blackofriday.com/ 204 www.hollisters-canada.ca/ bedroom, www.tommy-hilfigers.de/ good coincidence www.omegas-relojes.es/ I www.new-balance-schuhe.de/ was www.ralph-laurenpolosoutlet.com/ 204, www.new-balancecanada.ca/ would www.nike-shoescanada.ca/ like http://pelicans.nba-jersey.com/ to call www.polo-ralph-lauren.de/ you www.cheap-jordans.net/ know." Listen www.cheap-watches.in.net/ To the www.michaelkors-canadaoutlet.ca/ boy that www.cheap-mlbjerseys.us.com/ he www.cheapjerseys.us.org/ is www.ray-banssale.com/ also www.barbours.us.com/ 204 bedroom, http://broncos.nfljersey.us.com/ Lu Xiao surprised www.givenchy.com.co/ to www.hermesoutlet.shop/ say: "so http://bulls.nba-jersey.com/ clever, www.true-religion-jeans.com.co/ that go www.adidas-shoes.nl/ together, www.michaelkorsoutlet.se/ hello, http://seahawks.nfljersey.us.com/ my name Lu www.nike-store.in.net/ Xiao, brave www.converse-shoes.net/ Xiao." www.hermes-bags.net/ Finished out of hand. The www.nikefree-run.org.uk/ boy www.adidas-store.net/ saw Lu www.ralph-laurenoutletonline.com/ Xiao www.adidassuper-star.de/ toward his hand stretched www.toryburch-outlet.com.co/ out his hand quickly www.marcjacobs-outlet.com/ rushed www.hollister-abercrombie.com.se/ out, www.michaeljordan.com.de/ holding www.burberry-outlets-online.org.uk/ Lu www.christianlouboutinshoes.jp.net/ Xiao's hand quickly http://jazz.nba-jersey.com/ said: "Hello www.raybans-outlet.cc/ Hello, I www.prada-outlet.com.co/ called Qin Yong, Qin www.hugo-boss.com.co/ Shi http://browns.nfljersey.us.com/ Huang's Qin, brave www.toms-shoesstore.com.co/ courage." www.mcm-bags.us.org/ Lu Xiao listening to www.louboutin.jp.net/ the boy One www.prada-bagsoutlet.com/ by www.ralphslaurenoutlet.us.com/ one www.omegawatches.in.net/ I, smiled www.polo-ralphlaurens.us.com/ and patted the http://wizards.nba-jersey.com/ latter's shoulder, said: www.nikeshoesoutlet.org.uk/ "Qin www.rayban-pascher.fr/ Yong www.juicycoutureoutlet.net.co/ students, go, go www.oakley--sunglasses.com.au/ to the bedroom." Qin Yong looked www.nike-air-force.de/ at Lu www.nhl-jerseys.net/ Xiao's big www.toryburch-shoesoutlet.com/ bag, did www.new-balanceshoes.es/ not speak http://coach-outlet.tumblr.com/ readily www.nikeair-max.es/ took www.thenorthfacejackets.fr/ some www.nike-rosherun.com.es/ back www.rayban-sunglasses.co/ in the www.nike-huaraches.nl/ body, www.chrome-hearts.com.co/ watching www.burberry-handbags.net.co/ Lu Xiao laugh Said: "hey, www.jordanshoes.net.co/ my www.coach-outlets.net.co/ luggage www.air-yeezys.com/ in my www.raybans-outlet.it/ father http://michaelkors.blackofriday.com/ and www.coach-outletonline.ca/ mother there, they have to go www.nike-free-runs.de/ to the bedroom, let's www.air-jordanshoes.us/ go." www.nfl-jersey.us.org/ Then www.coachblackfriday.com/ they www.vans-schuhe.com.de/ went www.polos-outletstore.net/ out quickly. www.tory-burch.us.org/ Lu Xiao http://texans.nfljersey.us.com/ looked at this just know the http://rockets.nba-jersey.com/ tall, heart www.oakleys-outlets.net/ poured http://eagles.nfljersey.us.com/ into www.oakleyssunglasses.in.net/ a http://hornets.nba-jersey.com/ warm, www.thomas-sabos.com.de/ after www.coachfactory.shop/ all, http://suns.nba-jersey.com/ as www.the-northface.ca/ the latter www.oakleys-2017.in.net/ is www.burberryoutlet-sale.com.co/ so sincere and honest www.swarovski-crystals.us.com/ people are very www.chiflatirons.in.net/ few, www.cheap-baseballbats.us/ you www.iphone-cases.net/ must www.mlb-jerseys.us.com/ cherish www.nike-air-max.com.se/ this www.longchamp.com.co/ friend. Lu Xiao http://chiefs.nfljersey.us.com/ while thinking http://magic.nba-jersey.com/ about these www.air-huarache.co.uk/ side www.beats-by-dre.com.co/ quickly www.rolexwatches-canada.ca/ stepped www.uhren-stores.de/ forward to www.zcoachoutlet.com/ follow www.burberry-outletcanada.ca/ the pace http://ravens.nfljersey.us.com/ of www.toryburchsale.com.co/ Qin www.tomsshoes-outlet.us.org/ Yong.

www.rolexwatchesforsale.us.com/
whn
Sujet : Re : Coarctation de l'aorte Date : 14/10/2017, 23H38

Auteur :
clintons9
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Sujet : Re : Coarctation de l'aorte Date : 16/11/2017, 09H38

Auteur :
amyk0904
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