Phoebe was very special to all of us here, and this email is a bit challenging to compose. But am honored to be able to provide some comments/insights.

On a scientific and clinical level, we attempted and largely succeeded with a Mechanical Circulatory Support strategy for Phoebe that was a first of its kind, and a substantial step forward in our thinking on techniques for giving young infants the best chance forward when they present with end-stage heart failure associated with complex congenital heart disease. Her overall success with this strategy has already been shared with many other pioneering institutions, most of which seem very eager to replicate what we were able to achieve. On a personal and emotional level, having been given the opportunity to know this patient and family has been both extremely rewarding and bittersweet. Phoebe always had a zest for life, a real tenacious and amiable spirit, and I can only hypothesize that this was grounded in the tremendous amount of positive energy and love that was constantly bestowed upon her, really originated by her parents, and then disseminated to all the people around them. As a Heart Center, we have had many conversations about the model relationship that can exist between providers, families, and patients, and Phoebe is THE quintessential example of that. Although Phoebe’s time with us was shorter than any of us wished, she has and will continue to make a significant impact at many levels, for our field, for our teams, and for each of us as individuals.

The family’s ongoing philanthropic efforts will be directed in this manner, allowing us to push forward in how we support young children with intractable heart failure, giving each future Phoebe a better chance as she has already begun to do.

Message from Dr. David Rosenthal, Director Pediatric Advanced Cardiac Therapies (PACT), Stanford Medicine Children’s Health: 

Many of us in the PACT program were deeply touched by Phoebe and her incredibly loving and patient parents.  It is a testament to their remarkable spirit that they are reaching out to help support the PACT program at this time.  We would be honored to accept their gift and to use these resources to support our ongoing research efforts that include improving availability of donor hearts and increasing post-transplant longevity and wellness.