Dominique B She loves putting on makeup

The Little Mayor of Long-Term Care Goes Home

Kristina Baccigalupi saw her daughter’s face for the first time when Dominique was a little over one month old. That was the day Dom received a trach. Until then, her tiny face had been covered with feeding and ventilation tubes, and tape to secure the tubes.

Dominque has Barnes syndrome, an extremely rare condition that prevents the growth of the rib cage, essentially fusing the ribs. With no room for her lungs to grow, she experienced significant respiratory failure from birth. Needing round-the-clock expert medical care, Dom arrived at Children’s long-term care center in Mountainside in 2003, at age two, following several hospitalizations.

During her time at Children’s, Dom left to have numerous surgeries, life-saving procedures during which expansion rods were placed in her back and ribs to allow her lungs to grow. At age two, Dom used a trach to breathe and received nutrition through a G-Tube. She had never lived at home. “We always had in our hearts that we would bring her home,” said Kristina.

At Children’s, Dom made steady gains, recovering from each surgery and beating all odds. She received physical and occupational therapies and attended Children’s elementary school in Fanwood. Dom went from turning blue when touched, to being comfortable with everyone she met. Though when admitted, she had not yet rolled over or taken her first step, at four years old, Dom was making her rounds on the unit with a walker. Outgoing and vocal, she knew everyone. At five years old, Dom made a crucial leap in her recovery: She came off her 24/7 ventilator.

dominique with other children

At age 12, Dominique went home for the first time. Her family had moved and built an accessible house geared to her. Dom has her own wing on the first floor, with a customized bathroom. She graduates 8th grade this year. Dom uses crutches, and in many ways, is a wonderfully typical teen, hanging out with friends and savvy about all electronic devices. And she’s “very into makeup,” says Kristina. “We live at ULTA!” In March, Dom will visit cosmetology classes at VO-TECH Ocean County to see if this might be her career path. Her next surgery will remove the trach.

Dominique is one of 11 people in the world with Barnes syndrome, and the only one surviving today.

“She wouldn’t be here -- she wouldn’t be the person she is -- if it weren’t for Children’s,” says Kristina. “The nurses, the recreation department, the environmental staff, all played a part. She’s Miss Social Butterfly, and they accepted her, enjoyed her, and treated her like family.”