Survival and healthcare utilization of infants diagnosed with lethal congenital malformations.

OBJECTIVE: We assessed survival, hospital length of stay (LOS), and costs of medical care for infants with lethal congenital malformations, and also examined the relationship between medical and surgical therapies and survival. STUDY DESIGN: Retrospective cohort study including infants born 1998-2009 with lethal congenital malformations, identified using a longitudinally linked maternal/infant database. RESULTS: The cohort included 786 infants: trisomy 18 (T18, n = 350), trisomy 13 (T13, n = 206), anencephaly (n = 125), bilateral renal agenesis (n = 53), thanatophoric dysplasia/achondrogenesis/lethal osteogenesis imperfecta (n = 38), and infants > 1 of the birth defects (n = 14). Compared to infants without birth defects, infants with T18, T13, bilateral renal agenesis, and skeletal dysplasias had longer survival rates, higher inpatient medical costs, and longer LOS. CONCLUSION: Care practices and survival have changed over time for infants with T18, T13, bilateral renal agenesis, and skeletal dysplasias. This information will be useful for clinicians in counseling families and in shaping goals of care prenatally and postnatally.

Traumatic brain injuries in early childhood: initial impact on the family.

OBJECTIVE: The purpose of this study was to examine factors that affect parental burden and distress during the first few months following a traumatic brain injury (TBI) in young children. METHODS: Participants were consecutively enrolled children ages 3 through 6 years with either a TBI (n = 89; 21 severe, 22 moderate, and 45 complicated mild) or orthopedic injury (OI; n = 119) requiring hospitalization. During the post-acute period, parents provided information regarding the preinjury family environment and current caregiver functioning and injury-related burden. RESULTS: Compared with parents of young children with OI, parents of children with TBI reported greater overall caregiver burden and greater burden related to the injury. Parents of children with severe TBI also reported more stress with spouses and siblings and higher levels of parental depression and global distress relative to the OI comparison group. Parents of 5- to 6-year-old children reported significantly higher levels of both injury-related burden and distress than parents of 3- to 4-year-old children. Parents of children with mild TBI based on the Glasgow Coma Scale (GCS) who also had positive neuroimaging findings reported greater injury-related burden than parents of children with moderate TBI. Parents reported using a variety of coping strategies, with higher levels of denial and disengagement corresponding with greater injury-related burden and distress. CONCLUSIONS: Consistent with previous research on family adaptation to TBI in school-age children, chronic life stresses and interpersonal resources accounted for significant variance in measures of acute injury-related burden and parental distress in parents of younger children, although differences were small. TBI severity defined by GCS scores alone may not be sufficient to identify families at risk of increased burden. Findings suggest that services aimed at facilitating family adjustment following TBI in young children may need to consider a broader definition of risk factors when identifying families who would benefit from interventions.