DIX HILLS, N.Y. – Angela Cano worried she might kill her baby.
Born with Down syndrome (search) and a heart defect, little Joanna required a feeding tube when she was sent home from the hospital. But her mom feared doctors had not spent enough time explaining how it worked.
What if, as she was warned, instead of snaking the tube through her nose and down into her stomach, it went into the baby's lungs?
"You will drown your child literally," Cano said she was told. Then she was sent home with the tube and a "good luck."
Everything turned out fine for Joanna, now a precocious 11-year-old who still requires a daily regimen of medicine and a close watch on her health. But Cano's experience convinced her that the communication gap between doctors and parents of sick children is often vast — and goes both ways.
Doctors could provide better care and better advice, she thought, if they understood what families went through after leaving the hospital. So she joined a group of parents dedicated to bridging the divide.
"When I started this journey, doctors didn't have a lot of concern, or respect, for parents or their views or their ideas," Cano said. "As far as they were concerned it was like, `I'm the professional, I went to school, I'll call the shots.'"
The group she belongs to is Project DOCC (search) — for Delivery of Chronic Care. It was formed in 1994 by three Long Island mothers, initially funded by a New York City-based health care philanthropy, the United Hospital Fund.
It's now a part of more than 20 of the nation's most respected hospitals and medical schools, which put pediatricians-in-training into the homes of chronically ill and disabled children to learn how families cope. More than 1,000 pediatricians have been trained by Project DOCC parents.
"It is revolutionary in the sense that the parents are the teachers and they put together the curriculum and they establish what it is they want the residents to learn," said Dr. David Meryash, a developmental pediatrician at North Shore Hospital (search), where the program was first used.
It's not clear exactly how many children are living with chronic illness, but the number is surely in the millions and growing as medical advances keep more babies alive longer. In New York, approximately 585,000 children are considered chronically ill, according to the New York Academy of Medicine (search).
Frustrated by the medical profession in seeking treatment for their own children, Donna Appell, Maggie Hoffman and Nancy Speller met through the summer of 1994 in Appell's basement, living on "pizza, peanut M&Ms and Diet Coke." They drew up the Project DOCC curriculum.
"These children, because of our doctors, because of wonderful medicine, they're alive now and they would have died," Appell said. "And so because we have this new population of chronically ill children, it's almost something new that doctors need to think about."
The doctor training includes a house call to a home with a chronically ill child, an interview with the parents and a broader discussion with other doctors and five parents of ill or disabled children.
The program is mandatory for residents in such hospitals as Children's Memorial Hospital (search) in Chicago, Texas Children's Hospital (search) in Houston, and Emory University School of Medicine (search) in Atlanta.
In Hoffman's mind, the training is as critical as anatomy and physiology.
In creating the curriculum, the goal ultimately was for the families to achieve "the best quality of life, whatever that was," Appell said.
For some kids, that meant Little League even though they had to test their blood sugars every half-hour. For others, it meant getting in a wheelchair and coming to the dining table for a holiday dinner.
One recent snowy morning, Dr. Tamika Maxwell arrived at the Cano home in Dix Hills just in time to see Joanna take her daily batch of medicines.
In training at Good Samaritan Hospital in West Islip to be a pediatric specialist, the second-year resident was shown around the Canos' sprawling home where Joanna lives with six brothers and sisters. She heard about Joanna's ongoing battles with dermatitis (search) and athlete's foot (search), the obstacles the family faces when deciding where to vacation, and the health problems affecting her younger brother Jacob.
Maxwell also saw Joanna's bedroom with its Teddy bears, Hilary Duff autograph and dance trophies.
"I've had a decent experience in the hospital working with chronically ill patients, but working with the families is really 75 percent of your job," Maxwell said.
She said the Project DOCC instruction can pay off when both parents and physicians are faced with inevitable stressful situations.
"There's plenty of times parents are exhausted, frustrated and worried and that comes out in a negative way," said Maxwell. "If you can understand that, it makes it so much easier to understand where they're coming from when it's two in the morning and they're back in the hospital."