(San Diego, Calif.) - Valley Children’s was one of five California hospitals to recently complete participation in Project Baby Bear, a $2 million state funded Medi-Cal pilot program examining the impact of rapid Whole Genome Sequencing (rWGS) in improving care for critically ill infants with undiagnosed illnesses.
The program aimed to examine if rWGS would reduce the time involved in diagnosing rare diseases in critically ill newborns, enabling physicians to better treat their patients and ease the burden of uncertainty for parents. This cutting-edge technology is the most comprehensive genomic test available and sequences a person’s entire genetic code in an average of three days instead of the six to eight weeks usually needed for these types of genetic tests, providing physicians and families critical time to make more accurate care decisions.
The project, led by Rady Children’s Institute for Genomic Medicine, extended the invitation to Valley Children’s to participate in 2018, and by the end of the pilot, Valley Children’s had screened 38 babies under the program, resulting in 18 diagnoses – the most among all participating hospitals – and 10 (26%) babies received a significant change in management as a result.
The impacts of rWGS were profound in told and untold ways for both physicians and families. Valley Children’s neonatologists reported the ability to more effectively manage a child’s condition with new medication protocol and to more precisely and clearly communicate with families facing decisions about the withdrawal of medical care when it could be confirmed that the child would not survive.
“Our institution strives to stay up to date with genetic testing options offered to our patient population,” Valley Children’s Lead Genetic Counselor Jason Carmichael said. “It was an honor for Valley Children’s Hospital to be selected as part of Project Baby Bear, which brought a valuable resource to our underserved patients in the Central Valley.”
Aside from the better outcomes produced by rWGS, Project Baby Bear participants reported a reduction in overall healthcare spending – $2.5 million – the result of fewer hospital days and diagnostic tests and surgeries avoided due to having an accurate diagnosis.
“The fact that Project Baby Bear showed that rWGS not only produced better outcomes for children, but resulted in a significant reduction in the cost of their care is a testament to the value of this technology for both physicians and for families,” Dr. David Christensen, Valley Children’s senior vice president of medical affairs and chief physician executive said.
Valley Children’s joined UC San Francisco Benioff Children’s Hospital Oakland, UC Davis Children’s Hospital, CHOC Children’s Hospital and Rady Children’s Hospital in this groundbreaking pilot program.
“By every measure, Project Baby Bear has been a success – and improved the lives of our most vulnerable patients and their families,” Dr. Christensen said. “We will continue to advocate for this testing to be a covered Medi-Cal benefit in the State of California. It makes sense at every level – especially at the human one.”