{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,9,5]],"date-time":"2026-09-05T03:52:47Z","timestamp":1788580367794,"version":"build-2803163510"},"reference-count":8,"publisher":"Springer Science and Business Media LLC","issue":"1","license":[{"start":{"date-parts":[[2021,6,11]],"date-time":"2021-06-11T00:00:00Z","timestamp":1623369600000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0"},{"start":{"date-parts":[[2021,6,11]],"date-time":"2021-06-11T00:00:00Z","timestamp":1623369600000},"content-version":"vor","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0"}],"content-domain":{"domain":["link.springer.com"],"crossmark-restriction":false},"short-container-title":["Orphanet J Rare Dis"],"published-print":{"date-parts":[[2021,12]]},"abstract":"<jats:title>Abstract<\/jats:title><jats:sec>\n                <jats:title>Introduction<\/jats:title>\n                <jats:p>Severe epidermolysis bullosa simplex (EBS sev) is a rare genodermatosis characterized by congenital generalized blistering and mucosal involvement. Increased needs and decreased intake quickly lead to nutritional imbalance. Enteral nutrition support is proposed, but classical nasogastric tubes are not well tolerated in these patients and gastrostomy is preferred.<\/jats:p>\n              <\/jats:sec><jats:sec>\n                <jats:title>Objective and methods<\/jats:title>\n                <jats:p>To report the experience with EBS sev in neonatal units of French reference centers for gastrostomy. In this retrospective multicentric study, we included all patients with EBS sev who had gastrostomy placement before age 9\u00a0months during neonatal care hospitalization.<\/jats:p>\n              <\/jats:sec><jats:sec>\n                <jats:title>Results<\/jats:title>\n                <jats:p>Nine infants (5 males\/4 females) with severe skin and mucosal involvement were included. A gastrostomy was decided, at an early age (mean 3.7\u00a0months, range 1.4 to 8\u00a0months) in infants with mean weight 4426\u00a0g (range 3500 to 6000\u00a0g). Techniques used were endoscopy with the pull technique for 5 infants and surgery under general anesthesia for 4. Main complications were local but resolved after treatment. All infants gained weight after gastrostomy. The mean withdrawal time (n\u2009=\u20097) for the gastrostomy was 35.8\u00a0months (range 10.5\u00a0months to 6.5\u00a0years). Seven children had persistent oral disorders.<\/jats:p>\n              <\/jats:sec><jats:sec>\n                <jats:title>Conclusions<\/jats:title>\n                <jats:p>Gastrostomy in infants with EBS sev can be necessary in neonatal intensive care units. Both surgical and endoscopic pull techniques seem efficient, with good tolerance.<\/jats:p>\n              <\/jats:sec>","DOI":"10.1186\/s13023-021-01896-0","type":"journal-article","created":{"date-parts":[[2021,6,11]],"date-time":"2021-06-11T13:02:50Z","timestamp":1623416570000},"update-policy":"https:\/\/doi.org\/10.1007\/springer_crossmark_policy","source":"Crossref","is-referenced-by-count":2,"title":["Gastrostomy for infants with severe epidermolysis bullosa simplex in neonatal intensive care"],"prefix":"10.1186","volume":"16","author":[{"given":"M.","family":"Marro","sequence":"first","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"S.","family":"De Smet","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"D.","family":"Caldari","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"C.","family":"Lambe","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"S.","family":"Leclerc-Mercier","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-6063-5409","authenticated-orcid":false,"given":"C.","family":"Chiaverini","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"297","published-online":{"date-parts":[[2021,6,11]]},"reference":[{"issue":"4","key":"1896_CR1","doi-asserted-by":"publisher","first-page":"614","DOI":"10.1111\/bjd.18921","volume":"183","author":"C Has","year":"2020","unstructured":"Has C, Bauer JW, Bodemer C, et al. Consensus reclassification of inherited epidermolysis bullosa and other disorders with skin fragility. Br J Dermatol. 2020;183(4):614\u201327.","journal-title":"Br J Dermatol"},{"key":"1896_CR2","unstructured":"Pfendner EG, Bruckner AL. Epidermolysis Bullosa Simplex. GeneReviews\u00ae. Seattle (WA): University of Washington, Seattle; 1993\u20132019. 1998 Oct 7 [updated 2016 Oct 13]."},{"issue":"5","key":"1896_CR3","doi-asserted-by":"publisher","first-page":"665","DOI":"10.1097\/MOP.0000000000000666","volume":"30","author":"A Volpe","year":"2018","unstructured":"Volpe A, Malakounides G. Feeding tubes in children. Curr Opin Pediatr. 2018;30(5):665\u201370.","journal-title":"Curr Opin Pediatr"},{"issue":"1","key":"1896_CR4","doi-asserted-by":"publisher","first-page":"169","DOI":"10.1016\/j.giec.2015.09.001","volume":"26","author":"M McSweeney","year":"2016","unstructured":"McSweeney M, Smithers C. Advances in pediatric gastrostomy placement. Gastrointest Endosc Clin N Am. 2016;26(1):169\u201385.","journal-title":"Gastrointest Endosc Clin N Am"},{"issue":"12","key":"1896_CR5","doi-asserted-by":"publisher","first-page":"1321","DOI":"10.1007\/s00383-018-4358-6","volume":"34","author":"F Sandberg","year":"2018","unstructured":"Sandberg F, Viktorsd\u00f3ttir MB, Sal\u00f6 M, et al. Comparison of major complications in children after laparoscopy-assisted gastrostomy and percutaneous endoscopic gastrostomy placement: a meta-analysis. Pediatr Surg Int. 2018;34(12):1321\u20137.","journal-title":"Pediatr Surg Int"},{"issue":"3","key":"1896_CR6","doi-asserted-by":"publisher","first-page":"277","DOI":"10.1111\/j.1525-1470.2011.01612.x","volume":"29","author":"L Haynes","year":"2012","unstructured":"Haynes L, Mellerio J, Martinez A. Gastrostomy tube feeding in children with epidermolysis bullosa: consideration of key issues. Pediatr Dermatol. 2012;29(3):277\u201384.","journal-title":"Pediatr Dermatol"},{"issue":"5","key":"1896_CR7","doi-asserted-by":"publisher","first-page":"621","DOI":"10.1097\/MPG.0000000000000256","volume":"58","author":"K Patel","year":"2014","unstructured":"Patel K, Wells J, Jones R, et al. Use of a novel laparoscopic gastrostomy technique in children with severe epidermolysis bullosa. J Pediatr Gastroenterol Nutr. 2014;58(5):621\u20133.","journal-title":"J Pediatr Gastroenterol Nutr"},{"issue":"1","key":"1896_CR8","doi-asserted-by":"publisher","first-page":"42","DOI":"10.1111\/bjd.16139","volume":"179","author":"AP Zid\u00f3rio","year":"2018","unstructured":"Zid\u00f3rio AP, Le\u00e3o DO, De Carvalho KM, et al. Effectiveness of gastrostomy for improving nutritional status and quality of life in patients with epidermolysis bullosa: a systematic review. Br J Dermatol. 2018;179(1):42\u20139.","journal-title":"Br J Dermatol"}],"container-title":["Orphanet Journal of Rare Diseases"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/link.springer.com\/content\/pdf\/10.1186\/s13023-021-01896-0.pdf","content-type":"application\/pdf","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/link.springer.com\/article\/10.1186\/s13023-021-01896-0\/fulltext.html","content-type":"text\/html","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/link.springer.com\/content\/pdf\/10.1186\/s13023-021-01896-0.pdf","content-type":"application\/pdf","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2021,6,11]],"date-time":"2021-06-11T13:04:31Z","timestamp":1623416671000},"score":1,"resource":{"primary":{"URL":"https:\/\/ojrd.biomedcentral.com\/articles\/10.1186\/s13023-021-01896-0"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2021,6,11]]},"references-count":8,"journal-issue":{"issue":"1","published-print":{"date-parts":[[2021,12]]}},"alternative-id":["1896"],"URL":"https:\/\/doi.org\/10.1186\/s13023-021-01896-0","relation":{},"ISSN":["1750-1172"],"issn-type":[{"value":"1750-1172","type":"electronic"}],"subject":[],"published":{"date-parts":[[2021,6,11]]},"assertion":[{"value":"30 January 2021","order":1,"name":"received","label":"Received","group":{"name":"ArticleHistory","label":"Article History"}},{"value":"29 May 2021","order":2,"name":"accepted","label":"Accepted","group":{"name":"ArticleHistory","label":"Article History"}},{"value":"11 June 2021","order":3,"name":"first_online","label":"First Online","group":{"name":"ArticleHistory","label":"Article History"}},{"order":1,"name":"Ethics","group":{"name":"EthicsHeading","label":"Declarations"}},{"value":"Not applicable.","order":2,"name":"Ethics","group":{"name":"EthicsHeading","label":"Ethics approval and consent to participate"}},{"value":"Written informed consent was obtained from the patient\u2019s legal guardian for publication of this Letter to the Editor and any accompanying images. A copy of the written consent is available for review by the Editor-in-Chief of this journal.","order":3,"name":"Ethics","group":{"name":"EthicsHeading","label":"Consent for publication"}},{"value":"Authors do no declare conflict of interest.","order":4,"name":"Ethics","group":{"name":"EthicsHeading","label":"Competing interests"}}],"article-number":"271"}}