Atteinte d’atrésie des voies biliaires, Tess, âgée de 18 mois, a subi début janvier 2023 une greffe du foie. Sa maman, Tiphaine Guémas, habitante d’Aron, nous raconte.
[actuinterview actuinterview-prenomnom="Tiphaine%20Gu%C3%A9mas" actuinterview-initiales="TG" actuinterview-question="Comment%20avez-vous%20d%C3%A9couvert%20la%20maladie%20de%20Tess%C2%A0%3F" actuinterview-reponse="%C3%80%20la%20naissance%2C%20Tess%20avait%20les%20yeux%20jaunes.%20Elle%20a%20%C3%A9t%C3%A9%20flash%C3%A9e%20%C3%A0%20la%20maternit%C3%A9%20mais%20n%E2%80%99avait%20pas%20la%20jaunisse.%20%C3%80%20un%20mois%2C%20elle%20%C3%A9tait%20tr%C3%A8s%20jaune.%20Nous%20avons%20consult%C3%A9%20et%2C%20apr%C3%A8s%20une%20%C3%A9chographie%2C%20le%20diagnostic%20est%20tomb%C3%A9.%20Tess%20avait%20une%20atr%C3%A9sie%20des%20voies%20biliaires.%20Il%20lui%20manquait%20une%20voie%20entre%20le%20foie%20et%20l%E2%80%99intestin.%20La%20bile%20ne%20pouvant%20s%E2%80%99%C3%A9vacuer%2C%20elle%20avait%20le%20teint%20jaune.%20%C3%80%20terme%2C%20elle%20aurait%20pu%20souffrir%20d%E2%80%99une%20cirrhose.%20Nous%20avons%20eu%20du%20mal%20%C3%A0%20accepter%20cette%20malformation.%20On%20se%20demande%20pourquoi%20notre%20enfant.%20Et%20puis%2C%20on%20n%E2%80%99a%20pas%20d%E2%80%99autre%20choix%20que%20d%E2%80%99avancer%20pour%20elle%20et%20d%E2%80%99%C3%AAtre%20fort." /]
[actuinterview actuinterview-prenomnom="Tiphaine%20Gu%C3%A9mas" actuinterview-initiales="TG" actuinterview-question="Quel%20traitement%20vous%20a%20%C3%A9t%C3%A9%20propos%C3%A9%C2%A0%3F" actuinterview-reponse="Les%20m%C3%A9decins%20de%20Rennes%20nous%20ont%20propos%C3%A9%20une%20op%C3%A9ration%20qui%20consiste%20%C3%A0%20cr%C3%A9er%20une%20voie%20biliaire%20avec%20un%20morceau%20d%E2%80%99intestin%20de%20Tess.%20On%20nous%20a%20dit%20que%20%C3%A7a%20avait%2030%C2%A0%25%20de%20chance%20de%20fonctionner%20%C3%A0%20100%C2%A0%25.%20Les%20m%C3%A9decins%20se%20laissaient%20six%20mois%20pour%20savoir%20si%20l%E2%80%99op%C3%A9ration%20avait%20r%C3%A9ussi.%20Mais%20le%20teint%20de%20Tess%20ne%20s%E2%80%99am%C3%A9liorait%20pas%2C%20signe%20que%20la%20greffe%20n%E2%80%99avait%20pas%20pris.%0AL%E2%80%99%C3%A9t%C3%A9%20se%20passe%20bien%2C%20malgr%C3%A9%20une%20alimentation%20compliqu%C3%A9e.%20%C3%80%2018%20mois%2C%20Tess%20boit%20quatre%20biberons%20de%20100%C2%A0ml.%20Elle%20mesure%2071%C2%A0cm%20pour%208%C2%A0kg.%20Elle%20ne%20marche%20pas%20et%20ne%20fait%20pas%20de%20quatre%20pattes.%20Finalement%2C%20le%20teint%20jaune%20de%20Tess%20est%20revenu%20en%20octobre.%20Un%20nouveau%20bilan%20d%C3%A9but%20d%C3%A9cembre%20a%20mis%20en%20%C3%A9vidence%20des%20varices%20au%20niveau%20de%20son%20%C5%93sophage.%20Elles%20pouvaient%20%C3%A9clater%20et%20causer%20une%20h%C3%A9morragie.%20Tess%20a%20subi%20des%20fibroscopies%20toutes%20les%20semaines%20jusqu%E2%80%99%C3%A0%20d%C3%A9but%20janvier%2C%20moment%20o%C3%B9%20une%20petite%20h%C3%A9morragie%20s%E2%80%99est%20d%C3%A9clar%C3%A9e.%20On%20savait%20que%20son%20foie%20fatiguait.%20Les%20m%C3%A9decins%20%C3%A9taient%20inquiets.%20Il%20fallait%20faire%20une%20greffe%20du%20foie%20rapidement." /]
[actuinterview actuinterview-prenomnom="Tiphaine%20Gu%C3%A9mas" actuinterview-initiales="TG" actuinterview-question="Tess%20a%20%C3%A9t%C3%A9%20greff%C3%A9e%20le%205%C2%A0janvier%202023." actuinterview-reponse="Le%20papa%20de%20Tess%20a%20pass%C3%A9%20des%20examens%20pour%20v%C3%A9rifier%20s%E2%80%99il%20%C3%A9tait%20compatible%20pour%20faire%20don%20d%E2%80%99une%20partie%20de%20son%20foie%20%C3%A0%20sa%20fille.%20Il%20l%E2%80%99%C3%A9tait.%20Mais%20les%20m%C3%A9decins%20favorisent%20les%20greffons%20cadav%C3%A9riques.%20On%20nous%20a%20dit%C2%A0%3A%20on%20attend%20une%20semaine%20pour%20voir%20si%20un%20greffon%20arrive%2C%20sinon%20le%20papa%20sera%20le%20donneur.%20On%20a%20attendu%20huit%20heures.%20Je%20ne%20sais%20rien%20de%20celui%20ou%20celle%20qui%20a%20sauv%C3%A9%20ma%20fille.%20Je%20sais%20simplement%20qu%E2%80%99il%20s%E2%80%99agit%20d%E2%80%99une%20mort%20c%C3%A9r%C3%A9brale%20et%20que%20je%20peux%20%C3%A9crire%20une%20lettre%20%C3%A0%20la%20famille%20du%20d%C3%A9funt." /]
[actuinterview actuinterview-prenomnom="Tiphaine%20Gu%C3%A9mas" actuinterview-initiales="TG" actuinterview-question="Comment%20s%E2%80%99est%20pass%C3%A9e%20la%20greffe%C2%A0%3F" actuinterview-reponse="Le%20greffon%20est%20arriv%C3%A9%20%C3%A0%201h30%20le%20jeudi%205%C2%A0janvier.%20Tess%20est%20mont%C3%A9e%20au%20bloc%20%C3%A0%2013h%20et%20est%20revenue%20%C3%A0%201h30%20du%20matin.%20Pendant%20ce%20temps%2C%20nous%20n%E2%80%99avions%20aucune%20nouvelle.%20Nous%20ne%20savions%20pas%20si%20tout%20se%20passait%20normalement%2C%20s%E2%80%99il%20y%20avait%20des%20complications%E2%80%A6%20L%E2%80%99attente%20a%20%C3%A9t%C3%A9%20tr%C3%A8s%20longue.%20Par%20chance%2C%20le%20papa%20%C3%A9tait%20avec%20moi%2C%20puisqu%E2%80%99il%20n%E2%80%99a%20pas%20eu%20besoin%20de%20donner%20son%20foie.%20Sinon%20il%20aurait%20%C3%A9t%C3%A9%20hospitalis%C3%A9%20dans%20un%20autre%20%C3%A9tablissement.%20Le%20chirurgien%20nous%20a%20ensuite%20rassur%C3%A9s%20et%20dit%20qu%E2%80%99il%20n%E2%80%99y%20avait%20eu%20aucune%20complication.%20Nous%20avons%20pu%20voir%20notre%20fille%20%C3%A0%204h30%20en%20r%C3%A9animation.%20Elle%20%C3%A9tait%20intub%C3%A9e.%20Nous%20%C3%A9tions%20pr%C3%A9par%C3%A9s%2C%20heureusement.%20Elle%20a%20%C3%A9t%C3%A9%20extub%C3%A9e%20le%20lendemain%20et%20a%20re%C3%A7u%20de%20la%20morphine%20pendant%20deux%20jours.%20Elle%20n%E2%80%99avait%20pas%20de%20douleur." /]
[actuinterview actuinterview-prenomnom="Tiphaine%20Gu%C3%A9mas" actuinterview-initiales="TG" actuinterview-question="Trois%20semaines%20apr%C3%A8s%20l%E2%80%99op%C3%A9ration%2C%20comment%20va%20Tess%C2%A0%3F" actuinterview-reponse="Elle%20est%20toujours%20hospitalis%C3%A9e%20mais%20elle%20%C3%A9volue%20tr%C3%A8s%20bien.%20C%E2%80%99est%20une%20renaissance.%20Tous%20les%20examens%20sont%20bons.%20Il%20n%E2%80%99y%20a%20pas%20de%20rejet%20du%20greffon.%20Ce%20sont%20les%20quinze%20premiers%20jours%20qui%20sont%20d%C3%A9cisifs.%20Elle%20reste%20en%20isolement.%20Elle%20devra%20rester%20six%20mois%20%C3%A0%20la%20maison%20pour%20%C3%A9viter%20les%20microbes%2C%20donc%20je%20vais%20prendre%20un%20cong%C3%A9.%20Elle%20fait%20des%20choses%20qu%E2%80%99elle%20ne%20faisait%20pas%20avant.%20Elle%20a%20dit%20son%20premier%20Maman.%20Elle%20nous%20envoie%20des%20bisous.%20Elle%20devrait%20quitter%20l%E2%80%99h%C3%B4pital%20fin%20f%C3%A9vrier%20et%20ce%20samedi%2C%20elle%20va%20revoir%20son%20grand%20fr%C3%A8re%2C%20Mylann%2C%20qui%20a%204%20ans%20et%20demi.%20Il%20est%20press%C3%A9%20qu%E2%80%99elle%20rentre%20%C3%A0%20la%20maison." /]
Envie d'afficher votre publicité ?
Contactez-nousEnvie d'afficher votre publicité ?
Contactez-nous
L'espace des commentaires est ouvert aux inscrits.
Connectez-vous ou créez un compte pour pouvoir commenter cet article.