Afew hours after giving birth to baby girl Emery, Sharlin knew something wasn’t right. “It seemed she was eating OK,” Sharlin recalls, “but then she’d arch [her back], hold her breath and turn blue. We couldn’t figure out what was going on.”
The next morning, Emery was diagnosed with cleft palate and Pierre Robin sequence, a birth defect characterized by an underdeveloped jaw, a backward displacement of the tongue and an obstructed airway. Emery and her family were referred to Phoenix Children’s within the first week of Emery’s life.
It was a diagnosis that rocked Sharlin and her husband’s world. Sharlin knew the struggle that lay ahead—keeping Emery fed and nourished. Children born with cleft lip and palate (CL/P) are at high risk of malnutrition due to feeding challenges. Though the risk can be mitigated by close feeding and weight monitoring by a cleft care team, frequent visits to the hospital often pose significant burdens for caregivers.
This was certainly true for Emery’s parents. Exhausted from sleeping in shifts to make sure Emery’s airways stayed open, and from the near-constant feedings, Sharlin and her husband were in no condition to manage the drive to Phoenix Children’s from their home in the San Tan Valley.
So when Emery’s care team introduced the family to the hospital’s groundbreaking new program, the Infant Growth NutrITion fEeding (IGNITE) Home Monitoring Program, it changed everything. A digital health-tracking app tailored to infants with CL/P, IGNITE enables real-time tracking of infant feeding and weight. Each week, the baby’s health care team reviews the data, connecting with caregivers when an infant’s feeding or weight gain falls outside the desired parameters.
The best part: IGNITE is accessible from home via smartphones and tablets given to each family enrolled in the program—no more long drives back and forth to the hospital.
IGNITE is funded by Innovation Circle, a giving group that invests in high-impact projects. It was co-developed by Thomas Sitzman, MD, associate professor of plastic surgery at Phoenix Children’s, in collaboration with Children’s Mercy Kansas City. Prior to IGNITE, one in four children with CL/P at Phoenix Children’s was severely malnourished at 4 months of age. In the first six months after IGNITE launched, not a single child was malnourished.
Emery is now 6 months old, a joyful kid who loves meeting new people. She’s on track to reach 20 pounds—the goal weight for her CL/P surgery, scheduled for four days after her first birthday.
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