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Jack was diagnosed with a devastating condition called Edwards Syndrome, or Trisomy 18, two days after birth. Trisomy 18 is where an extra 18th chromosome disrupts the normal pattern of development in utero. Sadly, there is no cure and affected children have very short life expectancies. Only 5-10% of these children make it to their first birthday with boys having an even lower survival rate. 

Jack received care in our NICU for two weeks before he was able to transition to being at home. Our hospital provided care for the entire Caulfield family before, during, and after Jack’s passing at 105 days old.

Looking back on their experience with Packard Children’s, the Caulfield family says they are deeply grateful for our Family Guidance and Bereavement Program. The team supported mom Jessica, dad Sean, and older brother Ari through an unimaginable time, and after two virtual events, the Caulfields are proud to Scamper with us in-person this year to represent all families who benefit from Family Guidance and Bereavement.

After Jack was born on August 4, 2017, his care team at Lucile Packard Children’s Hospital Stanford gave him precious time with his family. During his two weeks in the NICU, Sean and Jessica worked with numerous specialists, which included Harvey Cohen, MD, PhD, the Katie and Paul Dougherty Medical Director of Palliative Care, as well as neonatologist Shazia Bhombal, MD. With their help, Jack had a chance to live at home with his family, an opportunity that many babies with Trisomy 18 do not have.

“I would describe Jack as a gentle soul,” says Jessica warmly. “From day one he stole the hearts of everyone.”

On November 16, 2017, Jack took his final breath, surrounded by love; it was all he ever knew. 

Shortly after Jack’s passing, a Relief Social Work Clinician named Emma reached out to Sean and Jessica. This was their first introduction to the Family Guidance and Bereavement Program.

Our hospital’s Family Guidance and Bereavement Program provides supportive services—including grief counseling, remembrance events, educational materials, and more—to families at no cost.

“Our program is philanthropically funded,” says Krista Reuther, LCSW, MPH, Director of the Family Guidance and Bereavement Program, “so all donations go directly to care for Packard Children’s Hospital’s bereaved families. We wouldn’t be able to provide these services to families if it weren’t for the generous donors to our program.”

We are so grateful for your support of the Family Guidance and Bereavement Program and families like the Caulfields through Summer Scamper.