StudyRareStudyRare
Log in to add personal notes on this page.

A male infant presents with dilated cardiomyopathy, neutropenia, and failure to thrive. He has recurrent bacterial infections. Urine organic acids show elevated 3-methylglutaconic acid. His maternal uncle died in infancy from heart failure.

XLR; TAFAZZIN (tafazzin, a cardiolipin remodeling enzyme)

  • Cardiolipin is a phospholipid critical for mitochondrial inner membrane structure and function
  • Deficient cardiolipin remodeling disrupts cristae formation and oxidative phosphorylation
  • Affects boys (X-linked); carrier females are typically unaffected
  • Dilated cardiomyopathy (most common presentation, can be fatal in infancy)
  • Neutropenia (cyclic or persistent): risk for bacterial infections
  • Skeletal myopathy (proximal weakness, exercise intolerance)
  • Growth delay / failure to thrive
  • 3-methylglutaconic aciduria (elevated on urine organic acids, a diagnostic clue)
  • Left ventricular noncompaction may be present
  • Urine organic acids: elevated 3-methylglutaconic acid (type II)
  • Cardiolipin analysis (abnormal cardiolipin species on blood spot or fibroblasts)
  • TAFAZZIN gene testing
  • CBC showing neutropenia
  • Heart failure management (ACE inhibitors, beta-blockers, diuretics)
  • Cardiac transplant if refractory
  • G-CSF for severe neutropenia
  • Prophylactic antibiotics during neutropenic episodes
  • Nutritional support

"Bart Simpson": think of Bart Simpson for Barth syndrome:

  • Bart's spiky hair looks like cristae (the tight folds of mitochondrial membrane); mitochondrial membrane curvature is affected
  • Cardiolipin synthesis is affected: "B-art-h affects the heart"
  • Barth is X-linked, so affects boys: Bart is a boy

3-methylglutaconic aciduria: Barth is one of the "3-MGA" disorders; elevated 3-methylglutaconic acid on urine organic acids is the biochemical clue.