(Madera, California) – Valley Children’s has now enrolled 10 patients in a groundbreaking, state-funded pilot program called Project Baby Bear. It provides rapid Whole Genome Sequencing (rWGS) to critically ill newborns in select cities throughout California. Valley Children’s is one of only five hospitals taking part in this pilot program.
As part of a project funded by the State of California, Project Baby Bear aims to use rWGS to help improve the treatment of infants and children with undiagnosed illnesses who are under the care of Medi-Cal, to ultimately decrease the cost associated with the program.
"Our partnership with the Project Baby Bear initiative significantly shortens the path to a diagnosis that will enable physicians to better treat their patients,” says Valley Children’s Hospital NICU Medical Director Dr. Mario Rojas. “At the same time, it lightens the burden of uncertainty for parents whose child is suffering from a rare disease.”
Medi-Cal does not currently cover rWGS testing. During this trial, testing is now available for free to participating Medi-Cal families. Test results are usually returned within three to five days from the lab located at Rady Children’s Genomic Institute in San Diego. Once a diagnosis is identified, the goal is to have potential treatment and medication options available for patients.
"Project Baby Bear has provided our critically ill infants with access to a life-changing genetic testing platform,” says Valley Children’s Geneticist Dr. Aaina Kochhar. “This program provides families of these children with prompt answers, which drastically changes the course of their clinical care. Our team is grateful to be in partnership with Rady Children's Genomic Institute and for lawmakers in the state legislature for funding this essential program.”
In a recent Project Baby Bear case, rWGS provided answers to a family whose baby was admitted to Valley Children’s with seizures. The advanced testing provided a diagnosis, allowing doctors to customize treatment. The results also gave reassurance to the patient’s family.
“When our child first got sick, we were so worried,” says the baby’s father, Armando Martinez. “With Project Baby Bear and the work of our son’s doctors, we have answers and Valley Children’s is helping our son get better.”
Valley Children’s Hospital is expected to enroll up to 35 patients by June of this year.