Phoebe’s Story
Phoebe Joy joined our family in 2021. She was born with a congenital heart disease called Tetralogy of Fallot and a genetic disorder called CHARGE syndrome. Although Phoebe’s vision and hearing were limited, her sense of touch was heightened and she could tell who mom and dad were by the touch of our hand in hers. Phoebe was a very strong little girl and fought hard against her heart disease. She spent her life in the cardiovascular care units at Lucile Packard (Stanford) Children’s Hospital and won the hearts of many of her care team. She was known for giving everyone the ‘stink eye’ (out of love!), having a smug little pout while sleeping, and a strong frown weighed down by her chunky cheeks. She had very expressive eyebrows and brought many smiles to those around her. She had many nicknames, including Pheebs, Phoebies, Phoebe Jeeby, Febe, PJ, tomato head, jello head, sweet pea, diva, princess, and troublemaker. She liked sitting in her boppy, throwing her hands in the air, tight swaddles, whipping her head back and forth, neck-exercises, and being the one in charge of her care plan. At the age of 3.5 months, Phoebe was welcomed into heaven. She was an incredibly special girl that brought joy to all those around her. Radiant joy.
Phoebe was so brave, overcoming 3 open heart surgeries in her short life. She taught us many lessons. She taught us that we can be joyful in all circumstances, that we are stronger than we think, and God can bring you peace that passes understanding. She taught us that there is incredible power in lifting one another up in prayer. She taught us to never underestimate someone’s potential, that God has a purpose for our lives even if we don’t know what it is, that there is space for God to work miracles in medicine, and that He is always with us. She taught us that every day is a gift from God and to treasure that time. Phoebe not only made us mom and dad, she made us better people. We love her so much and miss her each day.
It is because of the impact Phoebe had on all of our lives that all of the proceeds from this shop will go towards furthering the practice of pediatric cardiology and supporting families affected by congenital heart disease.
A life need not be long-lived for it to have been meaningful.
– Phoebe’s Family
These are the groups that we are currently donating to or plan to donate all proceeds to in Phoebe’s name:
Phoebe spent her entire life in the care of Stanford (Lucile Packard) Children’s Hospital. We are forever grateful for her amazing care team, and know that it was only because of them that we were able to spend as much time with Phoebe as we did.
The Action Learning Network is a collaborative focused on improving outcomes for patients with congenital heart disease, and specifically cardiomyopathy. Phoebe spent 2+ months being supported by a Ventricular Assist Device (VAD). The Action educates, advocates, and collaborates across the industry to continually improve practices and outcomes.
