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Outcomes of management decisions by parents for their infants with hypoplastic left heart syndrome born with and without a prenatal diagnosis
Author(s) -
Tibballs James,
CantwellBartl Annie
Publication year - 2008
Publication title -
journal of paediatrics and child health
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 0.631
H-Index - 76
eISSN - 1440-1754
pISSN - 1034-4810
DOI - 10.1111/j.1440-1754.2007.01265.x
Subject(s) - medicine , hypoplastic left heart syndrome , prenatal diagnosis , pediatrics , pregnancy , retrospective cohort study , medical record , prenatal care , surgery , obstetrics , fetus , heart disease , population , environmental health , biology , cardiology , genetics
Aim: To study the influence of a prenatal diagnosis on parental choice of treatment for infants born with hypoplastic left heart syndrome (HLHS). Methods: Retrospective review of medical records of infants admitted to a paediatric tertiary hospital 1983–2004 with a diagnosis of HLHS. Results: A total of 201 infants had HLHS diagnosed by echocardiography after birth with 129 subsequently undergoing surgery and 72 non‐surgical management (compassionate/comfort care). When the diagnosis of HLHS was made prenatally, 68 of 71 (96%) infants underwent surgery whereas when the diagnosis was made post‐natally 61 of 130 (47%) infants underwent surgery. Prenatal diagnosis was significantly associated with a parental choice of surgery ( P < 0.001). Among 72 infants managed non‐surgically, compassionate care was chosen by parents for 49 (68%) despite being fit for surgery, 20 (28%) were deemed unfit for surgery and in three (4%) the reasons for non‐surgical management were unknown. Of the total 178 infants considered fit for surgery, 68 (38%) had had a prenatal diagnosis and 110 (62%) did not. Of 20 considered unfit for surgery, none had had a prenatal diagnosis. A prenatal diagnosis was significantly associated with fitness for surgery ( P < 0.001). Conclusions: Approximately half of parents chose non‐surgical management (compassionate care) of their infant if the diagnosis was post‐natal. Although most parents of infants born with a prenatal diagnosis of HLHS chose surgical management of their infant, this is the likely influence of termination of pregnancy for this condition. Lack of prenatal diagnosis compromised fitness for surgery.