title: Inpatient hospital care of children with trisomy 13 and trisomy 18 in the United States.
abstract: OBJECTIVE
  Trisomy 13 and trisomy 18 are generally considered fatal anomalies, with a majority of infants dying in the first year after birth. The inpatient hospital care that these patients receive has not been adequately described. This study characterized inpatient hospitalizations of children with trisomy 13 and trisomy 18 in the United States, including number and types of procedures performed.
  
  
  METHODS
  Retrospective repeated cross-sectional assessment of hospitalization data from the nationally representative US Kids' Inpatient Database, for the years 1997, 2000, 2003, 2006, and 2009. Included hospitalizations were of patients aged 0 to 20 years with a diagnosis of trisomy 13 or trisomy 18.
  
  
  RESULTS
  The number of hospitalizations for each trisomy type ranged from 846 to 907 per year for trisomy 13 (P = .77 for temporal trend) and 1036 to 1616 per year for trisomy 18 (P < .001 for temporal trend). Over one-third (36%) of the hospitalizations were of patients older than 1 year of age. Patients underwent a total of 2765 major therapeutic procedures, including creation of esophageal sphincter (6% of hospitalizations; mean age 23 months), repair of atrial and ventricular septal defects (4%; mean age 9 months), and procedures on tendons (4%; mean age 8 years).
  
  
  CONCLUSIONS
  Children with trisomy 13 and trisomy 18 receive significant inpatient hospital care. Despite the conventional understanding of these syndromes as lethal, a substantial number of children are living longer than 1 year and undergoing medical and surgical procedures as part of their treatment.
authors.affiliation: Harvard Palliative Medicine Fellowship Program, Children’s Hospital Boston, Boston, Massachusetts, USA.
authors.forename: Katherine E
authors.initials: KE
authors.lastname: Nelson
authors.forename: Kari R
authors.initials: KR
authors.lastname: Hexem
authors.forename: Chris
authors.initials: C
authors.lastname: Feudtner
mesh_terms: D000293:Adolescent; D002648:Child; D002675:Child, Preschool; D025063:Chromosome Disorders / Q000235:genetics* / Q000401:mortality / Q000628:therapy*; D002882:Chromosomes, Human, Pair 13 / Q000235:genetics; D002887:Chromosomes, Human, Pair 18 / Q000235:genetics; D003430:Cross-Sectional Studies; D003695:Delivery of Health Care / Q000706:statistics & numerical data; D005260:Female; D006760:Hospitalization / Q000706:statistics & numerical data*; D006801:Humans; D007223:Infant; D007231:Infant, Newborn; D008297:Male; D012189:Retrospective Studies; D013514:Surgical Procedures, Operative / Q000706:statistics & numerical data; D015996:Survival Rate; D014314:Trisomy / Q000235:genetics*; D000073839:Trisomy 13 Syndrome; D014481:United States; D055815:Young Adult