Parental Experience of Prenatal Diagnosis of Lymphatic Malformation.

Lymphatic malformations are a developmental anomaly arising from a somatic mutation in the lymphatic endothelial cells. This study investigated parental experiences associated with prenatal diagnosis of LM. Parents of 5 children diagnosed prenatally with LM were recruited from the Vascular Anomalies Clinic at the Royal Childrens Hospital, Melbourne. Ten in-depth semistructured interviews were conducted with each parent separately to explore their experiences and views at the time of diagnosis and immediately after childbirth. Transcribed interviews were coded and thematically analyzed. Parents experienced prenatal diagnosis of LM as an unexpected and traumatic event. The lack of adequate information and clear care pathway created confusion and added to the difficulty of understanding the impact of LM on the unborn child and what to expect after the child was born. Parents used the internet as the primary source of additional information; however, some parents found that information distressing. Differences between mothers and fathers were noted in terms of roles that each parent played and their emotional responses during pregnancy and the prenatal diagnosis. Closer connection between obstetric centers and specialized treatment clinics are suggested to facilitate better understanding of the LM impact on the unborn child and available treatment options after birth. Copyright by International Society of Lymphology.