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For Liz, Motherʼs Day is forever linked to Lucile Packard Childrenʼs Hospital Stanford.

It all started with a springtime family outing in 2014.

Liz was celebrating Motherʼs Day with her 3-year-old son, Martin, and 9-month-old daughter, Cece.

When they returned home, Liz noticed that Cece was lethargic and had trouble holding her head up.

“I thought she was tired. But the next morning it was much worse,” Liz recalls.

Liz brought Cece to her pediatrician, Lloyd Brown, MD, an adjunct clinical associate professor at the Stanford School of Medicine, who suspected a startling reason for Ceceʼs weakness: infant botulism.

Infant botulism occurs when Clostridium botulinum bacteria, found in soil and dust, get into a babyʼs digestive system. Older children and adults pass the bacteria through their system quickly enough to avoid harm, but in babies, the bacteria can linger and produce a toxin that weakens muscles. When the breathing muscles are impacted, a baby can be in peril.

“Dr. Brown recommended we go straight to Packard Childrenʼs Hospital, and we did,” Liz says.

Infant botulism was confirmed as the cause of Ceceʼs distress, and she was admitted to the Pediatric Intensive Care Unit (PICU). Liz was horrified to watch her little girlʼs oxygen levels drop dramatically. Doctors placed Cece on a ventilator.

A Hand to Hold

“There were multiple times when I clutched a nurseʼs hand, watching what was happening and wondering if Cece would make it,” Liz says

The doctors identified the antitoxin Cece needed to survive and had it flown to our hospital.

“It was an incredibly hard time, but also a beautiful time in the PICU,” Liz remembers. “Everyone was rooting for their kids and everyone elseʼs kids. It was a true community among patient families and staff.”

Liz says the Packard Childrenʼs Hospital care team provided excellent care, not just for Cece, but for her, too. One particularly strong connection she built was with the PICU chaplain, Rev. Wally Bryen, MDiv.

“Reverend Wally brought much-needed spiritual care during our monthlong hospital stay,” Liz says. “I asked him to pray with me, and he did every day. I donʼt know how I would have gotten through it all without his daily visits.”

After two weeks in our PICU, Cece was transferred to another unit where she received physical therapy to regain muscle strength.

Your Gifts to Liz and Cece

Liz received visits from the Family Resource Librarian and remembers being given a kit of shampoo and supplies. In the blur of Ceceʼs hospitalization, Liz hadnʼt packed any essentials. The kit helped her take care of herself and have the fortitude to be present for Cece.

Thank you for ensuring families like Ceceʼs have what they need to face health crises.

Liz was so grateful for the spiritual care she received that she had Cece baptized at Packard Childrenʼs Hospital by Rev. Bryen before they left.

Today, Cece is a thriving 9-year-old! She loves art, and decorates and sells rocks as a fundraiser for Packard Childrenʼs Hospital. Her brother Martin has been inspired to join the fundraising efforts.

“Every year around Motherʼs Day, I think back to our time at the hospital and how far we have come,” Liz says. “There is a nurse, Aliza Cheslow, who Iʼm still in touch with, and I reach out to her. The hospital means a lot to us. I appreciate Ceceʼs amazing care team and everyone I met during our stay. Moreover, I am deeply grateful for the donors who make services including chaplaincy possible. It makes all the difference in the world to patients and their families.”

Want to Help More Kids like Cece?

Support services like chaplains, child life specialists, art and music therapists, and more rely on philanthropy to sustain their work. To provide more families with access to these services, make a gift to the Children’s Fund.

 

This article originally appeared in the Spring 2023 Children’s Fund Update newsletter.