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October is Pregnancy and Infant Loss Awareness Month. To some, this month comes and goes without thinking much about it, but to others, the grief is raw, it’s messy. The Caulfield family understands this all too well.
If you look at their most recent holiday photo, you will notice a then-5-year-old Ari’s warm smile, the kind faces of mom and dad, Sean and Jessica, and a special treasure nestled in Sean’s arms. This cute stuffed animal—dressed in a sweater and tiny striped pants—is called Lambie. It is as sweet and profound as little Jack, Ari’s younger brother, who lived for 105 days.
Jack was diagnosed with the 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 percent of these children make it to their first birthday with boys having an even lower survival rate.
Little Jack began the fight of his life August 4, 2017. His care team at Lucile Packard Children’s Hospital Stanford gave Jack this 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, 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.”
Dr. Cohen ensured in-home nurses were available and ready to assist with caring for their child in the Caulfield’s hometown of Monterey before the family left the hospital.
“These doctors always made the extra effort to make sure Jack was comfortable and we were supported,” says Jessica. “There would never be enough time with baby Jack, but the staff at Packard Children’s gave him a fighting chance to let us be a family of four for as long as possible.”
She adds, “Taking care of a medically fragile child is not for the faint of heart. People would tell us how strong we were but this was not a choice we were given. His diagnosis did not define the love he received.”
On November 16, 2017, Jack took his final breath, surrounded by love; it was all he ever knew.
“Jack’s life on earth may have ended all too soon, but his legacy continues,” says Jessica. “He will never be forgotten. Out of this unimaginable grief came something beautiful and unexpected.”
A new relationship formed between the Caulfields and the Family Guidance and Bereavement Program at Packard Children’s. Emma, a relief social work clinician, reached out to Sean and Jessica shortly after Jack’s passing.
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 bereaved families. We wouldn’t be able to provide these services to families if it weren’t for the generous donors to our program.”
Thanks to the support of donors like you, a bereaving Jessica, Sean, and Ari were comfroted during their time of grief. “The financial piece is the last thing you want to think about,” says Jessica. “They just remove that stress and are there for you.”
It was around Jack’s first birthday that an idea, The Lambie Project, started to form to help the aching hearts of families in grief. A project to help the aching hearts of families in grief, The Lambie Project, started to take shape.
Jessica had a stuffed lamb made to mirror Jack’s weight and length, hoping it would bring even the slightest bit of comfort to her and her family during this unimaginable time. It did much more than that.
“There is a physical ache from losing your baby; your arms are empty,” says Jessica. “The agony of losing a child is insurmountable. You long to hold your child in your arms, rock him, kiss him, feel him against you.”
For Ari, Jack’s older brother, Lambie became his best friend and a source of comfort. Lambie accompanies the Caulfields at events, in photos, and as Ari falls asleep. He is very much a part of the family.
This grieving mother thought if this little lamb could help her family, how many other families could benefit from a weighted animal? The Lambie Project was developed with the help and support of the Family Guidance and Bereavement Program in Jack’s memory.
The Caulfields want to extend this sense of empowerment to other families. They became Champions for Children, enlisting the help of their friends and family to raise money for The Lambie Project. As a result of their thoughtful efforts, any bereaved Packard Children’s family who would like their own Lambie can have one supplied by the Family Guidance and Bereavement team.
Every lamb is custom-made for families to replicate the feeling of holding the tiny family member they lost. They are personalized to replicate the baby’s weight.
Our Family Guidance and Bereavement Program—and the care teams who work with families who lose loved ones—are committed to meeting the needs of families in their most difficult moments and the years to come. Jessica, Sean, and Ari are deeply grateful for everyone who has been there for them.
Jessica reflects on her family’s journey with Lucile Packard Children’s Hospital Stanford and the Family Guidance and Bereavement Program: “You’re part of a group that you never wanted to join,” she says, “but it’s powerful to know that you’re not alone.”
Thank you, Jessica, Sean, and Ari, for sharing your family’s story with us, and providing comfort to other Packard Children’s families. You have done a beautiful job of honoring sweet Jack!
And thank you to our generous donors who have made our Family Guidance and Bereavement Program available for families like the Caulfields.
Inspired by the Lambie Project? Support our hospital and become a Champion for Children today.