Case Report: Diagnosis of Gaucher disease in a toddler with acute respiratory failure

A 22-month-old male infant presented with cyanosis and stridor after a trivial fall and then developed acute respiratory distress. The respiratory status of the patient progressed rapidly to severe acute respiratory distress syndrome. Additional findings of hypersplenism prompted a comprehensive mul...

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Main Authors: Sarah Householder, Ruchit Nagar, Nisarg Shah, Jodi Forward, Sean Bickerton, Pramod Mistry, E. Vincent S. Faustino
Format: Article
Language:English
Published: Frontiers Media S.A. 2025-03-01
Series:Frontiers in Pediatrics
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Online Access:https://www.frontiersin.org/articles/10.3389/fped.2025.1476541/full
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author Sarah Householder
Sarah Householder
Ruchit Nagar
Ruchit Nagar
Nisarg Shah
Jodi Forward
Sean Bickerton
Pramod Mistry
E. Vincent S. Faustino
author_facet Sarah Householder
Sarah Householder
Ruchit Nagar
Ruchit Nagar
Nisarg Shah
Jodi Forward
Sean Bickerton
Pramod Mistry
E. Vincent S. Faustino
author_sort Sarah Householder
collection DOAJ
description A 22-month-old male infant presented with cyanosis and stridor after a trivial fall and then developed acute respiratory distress. The respiratory status of the patient progressed rapidly to severe acute respiratory distress syndrome. Additional findings of hypersplenism prompted a comprehensive multidisciplinary approach and consideration of an inborn error of metabolism. Rapid whole genome sequence showed a compound heterozygote mutation in the GBA1 gene involving a maternally inherited known pathogenic variant, p.L483P, and a paternally inherited novel likely pathogenic variant, p.P358l. The diagnosis of Gaucher disease was confirmed with low leukocyte acid β-glucosidase activity and the patient received recombinant macrophage-targeted enzyme replacement therapy. The patient eventually recovered, but subsequent work-up demonstrated severe bulbar dysfunction with evidence of aspiration. Two months after discharge, the patient arrived at the hospital in a condition of cardiac arrest after a suspected aspiration event associated with hemoptysis. This case illustrates a previously undescribed presentation of Gaucher disease and a new likely pathogenic genetic variant for Gaucher disease. It highlights the role of a multidisciplinary approach, including rapid whole-genome sequencing, to establish timely diagnosis and provide appropriate therapy for Gaucher disease.
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spelling doaj-art-a92a4922eaac44ebb8e9b20cde6f5d9a2025-08-20T03:41:20ZengFrontiers Media S.A.Frontiers in Pediatrics2296-23602025-03-011310.3389/fped.2025.14765411476541Case Report: Diagnosis of Gaucher disease in a toddler with acute respiratory failureSarah Householder0Sarah Householder1Ruchit Nagar2Ruchit Nagar3Nisarg Shah4Jodi Forward5Sean Bickerton6Pramod Mistry7E. Vincent S. Faustino8Department of Pediatrics, Yale-New Haven Hospital, New Haven, CT, United StatesDepartment of Internal Medicine, Yale-New Haven Hospital, New Haven, CT, United StatesDepartment of Pediatrics, Yale-New Haven Hospital, New Haven, CT, United StatesDepartment of Internal Medicine, Yale-New Haven Hospital, New Haven, CT, United StatesYale School of Medicine, New Haven, CT, United StatesSecion of Hematology/Oncology, Department of Pediatrics, Yale-New Haven Hospital, New Haven, CT, United StatesDepartment of Pediatrics, Yale-New Haven Hospital, New Haven, CT, United StatesSection of Digestive Diseases, Department of Internal Medicine, Yale School of Medicine, New Haven, CT, United StatesSection of Critical Care, Department of Pediatrics, Yale School of Medicine, New Haven, CT, United StatesA 22-month-old male infant presented with cyanosis and stridor after a trivial fall and then developed acute respiratory distress. The respiratory status of the patient progressed rapidly to severe acute respiratory distress syndrome. Additional findings of hypersplenism prompted a comprehensive multidisciplinary approach and consideration of an inborn error of metabolism. Rapid whole genome sequence showed a compound heterozygote mutation in the GBA1 gene involving a maternally inherited known pathogenic variant, p.L483P, and a paternally inherited novel likely pathogenic variant, p.P358l. The diagnosis of Gaucher disease was confirmed with low leukocyte acid β-glucosidase activity and the patient received recombinant macrophage-targeted enzyme replacement therapy. The patient eventually recovered, but subsequent work-up demonstrated severe bulbar dysfunction with evidence of aspiration. Two months after discharge, the patient arrived at the hospital in a condition of cardiac arrest after a suspected aspiration event associated with hemoptysis. This case illustrates a previously undescribed presentation of Gaucher disease and a new likely pathogenic genetic variant for Gaucher disease. It highlights the role of a multidisciplinary approach, including rapid whole-genome sequencing, to establish timely diagnosis and provide appropriate therapy for Gaucher disease.https://www.frontiersin.org/articles/10.3389/fped.2025.1476541/fullGaucher diseasestridorpediatric ARDSgene replacement therapycase report
spellingShingle Sarah Householder
Sarah Householder
Ruchit Nagar
Ruchit Nagar
Nisarg Shah
Jodi Forward
Sean Bickerton
Pramod Mistry
E. Vincent S. Faustino
Case Report: Diagnosis of Gaucher disease in a toddler with acute respiratory failure
Frontiers in Pediatrics
Gaucher disease
stridor
pediatric ARDS
gene replacement therapy
case report
title Case Report: Diagnosis of Gaucher disease in a toddler with acute respiratory failure
title_full Case Report: Diagnosis of Gaucher disease in a toddler with acute respiratory failure
title_fullStr Case Report: Diagnosis of Gaucher disease in a toddler with acute respiratory failure
title_full_unstemmed Case Report: Diagnosis of Gaucher disease in a toddler with acute respiratory failure
title_short Case Report: Diagnosis of Gaucher disease in a toddler with acute respiratory failure
title_sort case report diagnosis of gaucher disease in a toddler with acute respiratory failure
topic Gaucher disease
stridor
pediatric ARDS
gene replacement therapy
case report
url https://www.frontiersin.org/articles/10.3389/fped.2025.1476541/full
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