Impact of Early Intervention on Maternal Stress in Mothers of Fetuses Diagnosed With Single Ventricle Physiology

Mothers of children with congenital heart disease are at increased risk of psychological
morbidity including stress, anxiety, and depression. In particular, mothers of patients with
single ventricle physiology who require neonatal surgery, face a great deal of stress
related to the risk of serious complications including neonatal death. Previous studies have
suggested that providing emotional psychosocial support may modify the development of
significant psychosocial problems in parents of children with congenital heart disease. The
pediatric palliative care team specializes in multiple elements of psychological and
spiritual care for families of such children.

The purpose of this pilot study is to evaluate maternal psychological distress and to
examine the potential impact of early palliative care team consultation on maternal anxiety
and depression symptoms, coping, and quality of life/family functioning in the care of
neonates born with single ventricle physiology. Mothers will complete four questionnaires
measuring anxiety, depression, and quality of life/family functioning at a prenatal follow
up visit and again prior to neonatal surgical hospital stay discharge (or at 30 days).
Infants will be randomly assigned (by date of birth) to receive early palliative care team
consultation or usual care (no or late palliative care intervention).

The investigators hypothesize maternal stress, anxiety, and depression will be lower in the
palliative care intervention group compared with the control group, and maternal coping
mechanisms and perceived quality of life and family functioning will improve at the
pre-discharge assessment.

Inclusion Criteria:

- Mothers pregnant with fetuses with single ventricle physiology who are planned to
undergo staged single ventricle palliative surgery with the first surgery occurring
in the neonatal period.

Exclusion Criteria:

- Mothers with neonates born at a gestational age of less than 32 weeks requiring
admission and management in the Neonatal Intensive Care Unit.

- Mothers with neonates diagnosed with major non-cardiac congenital anomalies requiring
additional surgical management beyond cardiac surgery in the neonatal period.

- Non-English-speaking mothers who are unable to adequately comprehend and respond to
survey questions administered as part of this study.