PARENTAL EXPERIENCE OF PRENATAL DIAGNOSIS OF LYMPHATIC MALFORMATION

Abstract

Lymphatic malformations (LM) 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 Children’s
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.