Fitness Files: Writing the future of treating children at CHOC

Imagine difficult years when a girl’s epileptic seizures sent her to the hospital frequently and the family’s annual hospital bills totaled nearly $20,000.

Think of her delight and the parents’ euphoria when her seizures, eliminated by a tiny incision, reduced a year’s hospital costs to a mere $334.

Or imagine your panic if your newborn suffered oxygen deprivation, putting him in danger of future disability or threatening his survival.

Now, visualize your relief when a strategy of reducing his body and brain temperature minimized the risk.

These miracles happen at Children’s Hospital of Orange County.

On Jan. 20, CHOC doctors were asked to imagine even bigger miracles.

Jan Lansing, interim vice president of the CHOC Foundation, led the charge. Doctors, famous for multitasking, listened in rapt attention to her call: “Join, cross disciplines, think at the highest level of magnitude about how CHOC can impact the world of pediatric healthcare.”

The goal: Attract donors at the major investment level.

Doctors had two months to write sweeping proposals, expanding what CHOC currently does so well to a future where CHOC is a worldwide hub of pediatric information and treatment.

CHOC doctors and UC Irvine faculty wasted no time in advancing plans for transformational medicine. On March 30, they presented ideas designed to help kids on a scale never before realized.

At CHOC’s conference center, 13 groups of doctors, given a scant 15 minutes each, stood before peers delivering what Lansing called “an embarrassment of riches,” one remarkable idea after another.

Dr. Anthony Chang, CHOC’s chief intelligence and innovation officer, described a data center of collective intelligence, gathered the world over from children’s treatment centers, a virtual pediatric network of best practices, translating years of research to a usable format.

Medical centers already have a base of patient information, but the proposal, using information technology, would revolutionize diagnosis and treatment of childhood diseases.

“It’s embedded in our DNA to search out the most comprehensive source,” Chang said. “If we galvanize all children’s hospitals through collective data wisdom, we’ll do better than any one diagnostician. Let’s use I.T.-driven information to make it happen.”

What follows is a sampling of venturesome proposals from CHOC and UC Irvine doctors, scientists and faculty.

1. Currently, molecular profiling detects cancer types, but not precisely. A new generation of genomic diagnostic tools redefines specific diagnosis, directing doctors to pinpoint treatment. The CHOC team would digitize biological tissue, generating data, building a data bank and sharing this with pediatric oncologists worldwide.

2. Build a CHOC Movement Disorder Center dedicated to 30,000 children treated at CHOC for cerebral palsy, spina bifida, muscular dystrophy and birth defects. Confined to wheelchairs, these children long for independence. The new center would develop and test robotic ambulation devices. Labs dealing with computer-assisted prosthetics would join doctors with researchers who are developing “mind-controlled” wheelchairs.

3. CHOC and UC Irvine could formalize treatment of rare diseases for the first time in history. Their specialists already employ stem cell and gene therapy. However, information is fragmented, and funding is needed to collect data and perform clinical trials.

4. CHOC/UC Irvine trials could inform uses of childhood medications nationwide. Only 20% of drugs given to children have been tested on children, but simply miniaturizing drugs originally designed for adults can cause long-term problems for kids. UCI, recognized for work with pediatric drug issues, would join with CHOC, in association with cutting-edge research, in assessing children’s reactions after a drug has been administered. Doctors cannot rely on the National Institutes of Health to protect children.

Dr. Nick Anas, CHOC pediatrician-in-chief, closed the day by saying that he saw bridges between ideas presented, leading staff to want to seek funding for all.

“Puzzle pieces will be joined,” he said, “ideas taken to major donors, insuring CHOC’s continuing momentum — assuming global leadership, curing children.”

For our sick kids’ sake, I hope donors step forward.

Newport Beach resident CARRIE LUGER SLAYBACK is a retired teacher who ran the Los Angeles Marathon at age 70, winning first place in her age group. Her blog is [email protected].