“Everyone hopes their life has impact, and in a short period of time, James’ life had an impact.”
When Alicia and James Lewis’ son, James III, was born on October 7, 2009, at Robert Wood Johnson University Hospital (RWJUH), the couple was devastated to learn that he only had a few months to live. He was diagnosed with Miller-Dieker syndrome, in which the brain doesn’t develop normally. The brain normally has many layers with folds and grooves. With Miller-Dieker syndrome, the brain is smooth and has fewer folds and grooves. This leads to seizures, developmental delays and intellectual disability, and many children die from the condition. “I wanted to do whatever was best for him,” recalls Alicia, who works at a hospital in New York City and lives in Metuchen.
James weighed only 3 pounds, 9 ounces at birth. He couldn’t eat or breathe on his own, so he was fed through a tube and placed on a ventilator in the Neonatal Intensive Care Unit (NICU) at The Bristol-Myers Squibb Children’s Hospital (BMSCH) at RWJUH. “He was so little,” she recalls. “I’d never held a baby that small. I was excited to see him and hold him.”
Exceptional NICU Care
Alicia wanted to spend as much time with her son as possible, so she found herself in the hospital for 15 hours a day (she went home every night). She bathed James and held him. There wasn’t a nurse she didn’t know. “They were there for him when I couldn’t be there,” she recalls. “I could tell how much they loved him. He was a person, not just a patient.” On Halloween, they dressed him in a frog costume. In November, they threw him a 1-month birthday party with cupcakes and sang “Happy Birthday” to him. “We knew he would never make it to his first birthday,” says Alicia. “So we celebrated every day of his life.”
Just before Thanksgiving, Alicia and James were able to take James home. He was given two to six months to live. Although he had gained weight and was able to breathe on his own, he continued to be fed through a tube and had to be monitored with a pulse oximeter, a device that measures the amount of oxygen a person receives. “It was so good to have him home,” recalls Alicia. “When you’re pregnant, you spend nine months preparing to bring your child home.” During the holidays, the local fire department brought James a stuffed Dalmatian with a red hat. Sadly, he passed away on January 2, 2010.
Helping Other Parents
After their son passed away, Alicia and James wanted to support other parents of preemies. On October 7, 2010, which would have been James’ first birthday, they donated 37 preemie outfits to the NICU. “We know how stressful it is to have a preemie,” says Alicia. “When you’re spending time in the hospital with your baby, you don’t have time to shop for clothes or food. Daily activities are difficult.” Every year, the couple collects preemie clothing from family and friends to donate to BMSCH. They’ve donated 1,120 outfits since James’ first birthday.
Alicia and James also wanted to honor James in perpetuity. “He made a huge impact on the NICU,” she says. They raised $20,000 to donate a library, the James Lewis III NICU Library at BMSCH, which is stocked with books about preemies for parents and siblings. “Each book has James’ name in it, so everyone who visits the library can take a piece of him home,” says Alicia. Parents of preemies can take any book they want free of charge. “The library makes me elated,” says Alicia. “It was a huge accomplishment for us and a forever memory for him. Everyone hopes their life has impact, and in a short period of time, James’ life had an impact.”
The ribbon-cutting ceremony for the new library was held on October 7, 2018, which would have been James’ ninth birthday. On the day of the ceremony, Alicia and James’ adopted daughter, 6-year-old CarliJames, and two family friends sat in the sill of a beautiful, circular window near the library. They noticed a monarch butterfly—which is said to represent the spirit of loved ones—flapping its wings just outside the window. Says Alicia: “I believe James was there with us that day.”
To support programs at Robert Wood Johnson University Hospital and The Bristol Myers-Squibb Children’s Hospital, visit www.rwjuhgiving.org or call 732.937.8750.