Introduction: Intraventricular hemorrhage (IVH) is a significant cause of morbidity and mortality in very low gestational age (VLGA) neonates. With current medical advances and the ability to resuscitate VLGA neonates, 9-16% of them will suffer from IVH. Hydrocephalus (HCP) will develop in 20-22% of surviving neonates. The decision to place a ventriculoperitoneal shunt (VPS) in these patients is a difficult one to make. Caregivers, along with the medical team, must decide whether to pursue aggressive, full medical support that may leave the child significantly disabled or turn to palliative care.

Methods: Retrospective chart review of patients with severe IVH as a neonate with subsequent placement of a VPS. Families with children with IVH grades III or IV were identified and received two questionnaires, the CHQ-28 that measures pediatric quality of life, and an institution generated quality of life survey.

Results: Twelve patients’ families returned the two questionnaires. Ninety-two percent reported that placement of a VPS was absolutely the right thing to do for their family and 8% felt most likely that it was the right decision. Eighty-three percent would absolutely make the decision again to place it, while 17% would most likely choose again to place it. Fifty-eight percent stated excellent inter-familial interactions while 33% reported very good and 8% good relations. Ninety-two percent felt that they absolutely or mostly understood the special needs that their child might have had at the time they made the decision.

Conclusions: Qualitative results revealed that families with a child with severe IVH had positive quality of life outcomes and would overwhelmingly make the same decision to place a ventriculoperitoneal shunt again, even after experiencing the particular special needs or limitations of the child and how it impacts the entire family.

Patient Care: Our research will provide families with a support group style of quality of life information from other families that faced the same difficult decision at one time. This information might provide reassurance, solace, or just a different perspective to think about when making the decision for their own family.

Learning Objectives: By the conclusion of this session, participants should be able to: 1)Describe the importance of the morbidity and mortality associated with severe IVH (grades III and IV), 2) Discuss how to facilitate the decision making process of whether to place a VPS for IVH and HCP for individual families, 3) Identify the value of previous families' sentiments and perspectives on providing future families with more information about potential quality of life for the family.

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