Families incur higher travel and accommodation expenses during hospitalization than during non-hospitalized periods. Instrumental support, e.g., parking vouchers, can help families minimize these costs. Future studies should investigate whether early return to work during bereavement is driven by economic considerations or a desire for distraction. Data analyzed in this study were collected as part of a clinical trial, registered on ClinicalTrials.gov, No. NCT04236180, 15 March 2019 What Is Known: • Families of children with life-limiting conditions are at risk of substantial financial burden from high out-of-pocket medical expenses. • It is also known that parents often have to incur out-of-pocket non-medical expenses and reduce their work commitments. Little is known about the economic consequences of losing a child to a life-limiting condition. • We provide new longitudinal evidence on the hospitalization- and death-related financial and employment implications for families of children with life-limiting conditions. • Child hospitalizations add to families' financial burden through increased travel and accommodation expenses. Work commitments rose during early bereavement.