French national reference center for chronic and malformative conditions of the esophagus (CRACMO)
The rare diseases managed by the reference center are chronic malformations and disorders of the esophagus. They are often isolated, but can sometimes be observed in syndromic associations. Associated malformations (pulmonary, digestive, ENT, cardiac, etc.) must be identified to ensure better overall management.
The Necker-Enfants malades reference center brings together all the skills and expertise needed to manage esophageal pathologies, whatever their complexity. The center also has particular expertise in the management of associated ENT, cardiac, pulmonary and orthopedic pathologies, starting in the neonatal period, thanks to the existence of an expert neonatology department on site. The Necker-Enfants malades referral center has a strong referral activity, accepting children from all over France, from overseas departments and regions, and from abroad.
The site’s medical staff (visceral surgeon, thoracic surgeon, orthopedist, neonatologist, pulmonologist, ENT specialist, gastroenterologist, oral specialist) and paramedical staff (stomatotherapist if gastrostomy, dietician, psychologist, social worker) work together to offer a multi-disciplinary care pathway and comprehensive care tailored to each child.
This reference center is affiliated to the Fimatho rare diseases healthcare network and the Eurogen European reference network (ERN) for rare and complex urogenital diseases and conditions.
Keywords: esophageal atresia, achalasia, eosinophilic oesophagitis, feeding difficulties.
Medical
team
Responsible physician
Pr Alexandre Lapillonne
MD, PhD
Dr Véronique Rousseau
In case of emergency
On-call surgeon : +33 (0)1 71 39 68 49
Emergency department : +33 (0)1 44 49 42 90
- Esophageal atresia
> Orphanet file - Congenital esophageal stenosis
- Esophageal achalasia
> Triple A syndrome
> Idiopathic achalasia of esophagus
> Achalasia-microcephaly syndrome - Congenital tracheoesophageal fistula
- Eosinophilic esophagitis
- Pr Alexandre Lapillonne, neonatologist, head of the reference center
- Dr Véronique Rousseau, neonatologist surgeon
- Pr Sabine Sarnacki, head of department
- Dr Sylvie Beaudoin, neonatologist surgeon
- Dr Naziha Khen Dunlop, neonatology surgeon
- Pr Christophe Chardot, pediatric digestive surgeon
- Pr Christophe Delacourt, pneumopediatrician
- Dr Christel Chalouhi, pediatrician specializing in orality
- Dr Briac Thierry, ENT pediatrician
- Pr Christophe Glorion, orthopedist for children
- Dr Cécile Talbotec, pediatric gastroenterologist
- Pr Florence Campeotto, pediatric gastroenterologist
- Therapeutic education of children with digestive and / or urinary continence disorders with digestive and / or urinary stoma and their parents
- Prevention of respiratory decompensations
- Child’s disability stress rehabilitation center
- Therapeutic education pathway for young people with Pierre Robin Syndromes or related syndromes, congenital sucking-swallowing disorders and post-traumatic oral disorders, and their parents
- Therapeutic education pathway for children and their parents in home enteral feeding techniques
- Therapeutic education for chronic respiratory failure in children treated with non-invasive ventilation
Reconstructing an esophagus by tissue engineering (P. Cattan)
- Performance of prenatal diagnosis in esophageal atresia. Spaggiari E, Faure G, Rousseau V, Sonigo P, Millischer-Bellaiche AE, Kermorvant-Duchemin E, Muller F, Czerkiewicz I, Ville Y, Salomon LJ.
Prenat Diagn. 2015 Sep;35(9):888-93. doi: 10.1002/pd.4630. Epub 2015 Jul 6. - Management and outcome of neonates with a prenatal diagnosis of esophageal atresia type A: a population based study. Garabedian C, Bonnard A, Rousseau V, Sfeir R; CRACMO, Blanc S, Boubnova J, Jacquier C, Irtan S, Breton A, Fouquet V, Guinot A, Lamireau T, Habonimana E, Schneider A, Elbaz F, Ranke A, Poli-Merol ML, Kalfa N, Petit T, Michel JL, Buisson P, Lirussi-Borgnon J, Lardy H, Parmentier B, Cremillieux C, Schmitt F, Borderon C, Jaby O, Pelatan C, De Vries P, Pouzac-Arnould M, Grosos C, Breaud J, Tolg C, Chaussy Y, Laplace C, Drumez EE, Michaud L, Gottrand F, Houfflin-Debarge V.
Prenat Diagn. 2018 May 8. doi: 10.1002/pd.5273. [Epub ahead of print - Thoracic skeletal anomalies following surgical treatment of esophageal atresia. Lessons from a national cohort. Bastard F, Bonnard A, Rousseau V, Gelas T, Michaud L, Irtan S, Piolat C, Ranke-Chrétien A, Becmeur F, Dariel A, Lamireau T, Petit T, Fouquet V, Le Mandat A, Lefebvre F, Allal H, Borgnon J, Boubnova J, Habonimana E, Panait N, Buisson P, Margaryan M, Michel JL, Gaudin J, Lardy H, Auber F, Borderon C, De Vries P, Jaby O, Fourcade L, Lecompte JF, Tolg C, Delorme B, Schmitt F, Podevin G.
J Pediatr Surg. 2018 Apr;53(4):605-609. doi: 10.1016/j.jpedsurg.2017.07.013. Epub 2017 Jul 21. - Posttraumatic Stress Reactions in Parents of Children Esophageal Atresia. Le Gouëz M, Alvarez L, Rousseau V, Hubert P, Abadie V, Lapillonne A, Kermorvant-Duchemin E.
PLoS One. 2016 Mar 8;11(3):e0150760. doi: 10.1371/journal.pone.0150760. eCollection 2016. - Prenatal diagnosis and evaluation of defect length in esophageal atresia using direct and indirect (tracheal print) signs. Quarello E, Saada J, Desbriere R, Rousseau V, De Lagausie P, Benachi A.
Ultrasound Obstet Gynecol. 2011 Aug;38(2):225-8. doi: 10.1002/uog.8888. Epub 2011 Jun 27.
- Association française de l’atrésie de l’œsophage
In 2021, in partnership with the health insurance, the association developed a social aid simulator (governed by French law, on French territory). Its objective is to indicate for each person caring for a relative, the financial and social aid to which they can claim, according to their personal situation and the situation of the person being cared for. It can therefore be used by any person – beyond oesophageal atresia – concerned by a rare or chronic disease, a disability, etc.
Contact information
Necker-Enfants malades university hospital
> Pediatric visceral surgery department
149 rue de Sèvres
75743 PARIS Cedex 15
In Necker, the CRACMO reference center in brief …
* data valid for 2022