The Next Frontier
New Pediatric Specialty Focuses on Developmental and Behavioral Conditions in Children

BY THERESA JOHNSTON

At age 1, Tobias Kamath was diagnosed with autism, one of many developmental disorders that specialists see at Packard Children's.

SPRING 2007 -- Tobias Kamath is an energetic preschooler who loves sliding in his backyard, stacking Duplos, and watching Thomas the Tank Engine. But when the little boy passed his birthday last year without speaking, his pediatrician suspected that something was wrong. Seeking a diagnosis, the family came to Heidi Feldman, MD, PhD, a nationally recognized child language expert and the newly recruited director of the Maggie Adalyn Otto Developmental and Behavioral Pediatrics Program at Lucile Packard Children's Hospital. Feldman confirmed that Toby has autism, a neurodevelopmental disorder that makes it difficult for some youngsters to interact with the outside world. 

Autism is just one of the complex disorders that Feldman sees in her new post in Developmental and Behavioral Pediatrics (DBP), an emerging pediatric subspecialty that focuses on conditions that affect a child's ability to learn, socialize, or perform daily living activities.

Heidi Feldman, MD, PhD, director of the Maggie Adalyn Otto Developmental and Behavioral Pediatrics Program.

Feldman has been in the Bay Area only since last October, when she moved from the University of Pittsburgh to accept the Ballinger-Swindells Endowed Professorship in Developmental and Behavioral Pediatrics at the Stanford School of Medicine. She was recruited to expand the hospital's DBP programs. As Feldman explains, pediatrics at one time was almost entirely concerned with infectious diseases and other short-term conditions. But as immunizations, antibiotics, and public sanitation have made huge inroads against acute childhood illnesses in developed countries, chronic concerns such as developmental and behavioral issues have emerged as the prominent problems.

A New Field

Recognized as a subspecialty in 1999, DBP focuses on diagnosing, monitoring, and treating youngsters who have such conditions. Feldman estimates that about 7 to 8 percent of all children need DBP services. Autism and related disorders like Asperger syndrome are among the most common developmental disabilities, affecting as many as one in 150 children. DBP specialists also work frequently with kids who have attention deficit/hyperactivity disorder, cerebral palsy, motor and language delays, epilepsy, and Down syndrome. 

Before the 1960s, many of these youngsters would have been cared for in institutional settings. Today, though, with home-based care the norm, families of children with developmental and behavioral challenges need all the support they can get. DBP specialists not only are experts at diagnosing developmental and behavioral problems, they're also prepared to help with the next step: steering families toward the community resources they need, including speech, physical and occupational therapists, psychologists, parenting classes, dieticians, nurse practitioners, respite care providers, e-mail newsgroups, tutors, and special education programs. 

For children like Toby who have autism, early intervention and family support are particularly important. So these days, his busy weekly schedule includes one hour of speech therapy at home, a couple of hours at Palo Alto's Community Association for Rehabilitation, and 25 hours of Applied Behavioral Analysis, a promising home-based therapy that uses frequent small rewards to teach social and behavioral skills. His mother also hopes to enroll him in a Menlo Park gymnastics class for special needs children. 

Getting an Early Start

The roots of Packard's DBP programs sprouted more than 15 years ago as David Stevenson, MD, the Harold K. Faber Professor of Pediatrics at Stanford University's School of Medicine, worked to save the lives of premature infants. Many sick and lowbirth weight babies are at high risk for developmental and behavioral problems as they grow--everything from excessive crying and sleeping problems to serious motor, language, and learning delays. 

"I felt that it wasn't right to take care of these kids [in the hospital] and not follow through," explains Stevenson, who now is the director of the Charles B. and Ann L. Johnson Center for Pregnancy and Newborn Services. "It was a huge missing piece at a great university." So when the Johnson Center was founded in 1997, he and his colleagues simultaneously opened the Mary L. Johnson Developmental and Behavioral Unit. Over the past decade, thousands of Packard patients have benefited from its services. Among them is Clarity Keller, who was born at 34 weeks gestation with DiGeorge Syndrome, a chromosome deletion associated with heart defects, esophageal problems, and facial anomalies. 

Clarity Keller was born prematurely with DiGeorge Syndrome, a genetic disease that has given her severe eating and breathing problems. The 2-year-old benefits from physical therapy and a variety or other services from Packard's DBP program.

In her first two years of life, Clarity has had to deal with severe breathing problems, oralfeeding aversions, and some hearing loss. But fortunately, says her mother, Lisa, the Los Gatos family receives "tons and tons of great support" from Packard therapists and physicians who work with Clarity on her feeding skills and help the family devise long term plans for her care. Clarity's most recent triumph was at the breakfast table. "She ate 15 Cheerios by herself this morning," her mother says proudly. "It's just a miracle. I can't think of a better word for it. We have an awesome team." 

Another preemie graduate, 4-year-old Vidya Patel of San Mateo, was born at Packard eight weeks early and spent about a month in the hospital's Neonatal Intensive Care Unit. Since then, the talkative preschooler has gone back to the hospital every six to 12 months for a complete evaluation of her behavioral and physical development. Normally Vidya shows little evidence of her rough start. But when tests recently highlighted some problems with her ability to recognize visual patterns--a crucial skill for reading--her Packard psychologist was happy to pass along some workbook exercises to help Vidya at home."Knowing that I had these services available was such a relief," says her mother, Urvashi. Today Vidya is doing much better, she adds, and "tremendously looking forward to kindergarten." 

Four-year-old Vidya Patel was born eight weeks early at Packard and receives complete evaluations of her behavioral and physical development every six to 12 months as part of Packard's preemie graduate services.

Currently these clinical services are available primarily to youngsters who were born at Packard and/or treated in the Packard Neonatal Intensive Care Unit. But with help from donors, Feldman and her colleagues hope to expand these programs to serve all community children, regardless of the hospital where they were born or treated shortly after birth. Packard already has launched two special clinics for kids with Down Syndrome and autism. Planners envision a broader two-part system: an intake triage clinic where parents could seek diagnosis and referral for any child they think might have a developmental or behavioral issue, and a general clinic that would offer longer-term support, including referrals when necessary to established local therapists, special education programs, and agencies such as the Children's Health Council in Palo Alto. 

More DBP Experts Needed 

Another goal at Packard is to encourage the next generation of developmental and behavioral pediatric subspecialists--and to educate general pediatricians about the field, too. To do this, Packard and the Stanford School of Medicine recently teamed up to launch a popular new Developmental-Behavioral Pediatrics rotation. Now in its second year, the one-month training program sends Packard pediatric residents into local neighborhoods, where they can observe typical and atypical child behavior at preschools, community clinics, and rehabilitation agencies. One assignment even has the residents visit a nearby bookstore, to select and critique a general-interest book on parenting.

The idea, Feldman says, "is for residents to see firsthand what programs are out there for children who have developmental problems, and how schools deal with children who have behavioral issues. They're out in the field, they're building relationships; they're communicating with the workers on the front lines. I think it really changes who they become as physicians." 

Packard resident Jon-Michael Castelli, MD, describes one particularly instructive case during his own recent DBP rotation involving a 3-year-old boy who was not yet talking. As Castelli recalls, the child had an older brother who was diagnosed as having autism, "so when he lost verbal milestones it was a huge red flag for the mother." But after a thorough evaluation, doctors ruled out autism and determined that the younger boy had language delay instead. "The right training in what is normal development, as well as the signs of abnormal development, are paramount to a pediatrician's training," Castelli says. "You never want to miss a diagnosis that early intervention will treat. I'm more inclined after this rotation to screen for developmental issues. Perhaps more importantly, I now know much more about the diagnostic and therapeutic resources available to me and my patients." 

Linking Research to Care 

Perhaps the greatest legacy of Packard's expanded DBP program will be its scientific studies on the causes and best treatments for these often frustrating conditions. As Director Feldman notes, "It's important for any program on such a prestigious campus to contribute to research as well as clinical services." Some Packard physicians are looking into the best ways to improve motor outcomes in children who were born prematurely. Feldman herself is studying children who have sustained injuries to their white matter, the "wiring" that connects the brain's processing centers to the body.

"It's an area that's particularly fragile in premature babies," she explains. "We know that some children who've had injuries to the white matter do well, and others who've had more extensive injuries don't do very well, and then there is a group in between. So understanding which elements of the underlying structure affect function, and how the brain is capable of reorganizing if areas have been damaged, is an area that interests me greatly." 

Though there is much yet to do, Packard's DBP program already is flourishing, thanks to deep commitment from donors, physicians, and hospital staff, Feldman says. "When I came here, there were a lot of very talented professionals working together well. I was lucky." She aspires to expand the DBP program to provide services for children throughout the Hospital and community who face developmental challenges because of conditions such as heart disease or cancer. 

Johnson Center Director Stevenson shares her enthusiasm, predicting that "we're probably going to have one of the very best programs in the world, not only at preventing the problems but also managing them and maximizing the outcomes for kids."