Dome home blank
Search Dome


Partners in Care
Families are at the center of a new Children’s Center project.


Robert Hicks Jr. and son
Robert Hicks Jr., whose son Robert spent months in intensive care, serves on the steering committee for family-centered care.

It's not supposed to be like this," thought Robert Hicks Jr., as he watched his newborn son, born full term, fall critically ill at birth. Baby Robert was diagnosed with persistent pulmonary hypertension, a rare but serious condition that occurs when a newborn's circulation system does not adapt to breathing outside the womb. As Robert labored to breathe, his heart growing dangerously large from exertion, he was surgically attached to a heart-lung bypass machine, where he remained for an unusually long 14 days. His father struggled with ways to cope.

"I finally relied on my business sense," says Hicks, a software company manager. "I decided I needed an action plan. I needed to be informed." So Hicks asked to meet regularly with the rotating team of physicians, nurses and medical staff about the goals and plans for his infant son.

Hicks earned the respect of Robert's caregivers, enough to be included in the seemingly secretive daily bedside rounds. He built relationships and as a result, felt comfortable speaking up at times, for example, when he thought Robert could calm himself without the need of a sedative.

The Hicks family became welcome, visible and vital participants in Robert's medical care, and that, says pediatric chairman George Dover, is the way the Children's Center needs to practice medicine in the future.

To investigate the concept of parents as partners, the Children's Center has launched the new Family-Centered Care Initiative. Input from parents, and sometimes the patients themselves, will be considered where it never has before, most notably at the patient's bedside.

"I don't have a medical degree," says Hicks. "But I have a parent degree. Nobody else knew Robert as well as we did." No one else, he says, followed Robert from unit to unit or procedure to procedure, through shift changes and staff rotations over months of hospitalization. "We were the constant," says Hicks.

Family-centered care is not only a national trend, but a complement to the patient service surveys and hospital values being examined throughout Hopkins. But, says Juliette Schlucter, president of Bridgekeeper, a consulting service hired by the Children's Center to help develop a family-centered approach, customer service is only the beginning.

"The complexity of medicine is such now that we have to expect families to be part of the team," says Dover of the need to close gaps in medical care that can occur at the very best of hospitals. "We need to have a system in place that allows parents to feel empowered to do that."

With its attention to patients' emotional and physical needs, dedicated staff and evolving facilities, the Children's Center can hardly be considered a place that discounts parents. In that regard, family-centered care can be a hard sell to those who feel that they already work closely with families.

But, says Dover, "We have to at least ask if we need to change the way we do things."  Should rounds occur later in the morning, when parents are awake, so they might participate? Can medical procedures be performed without separating parents and children? Dover is looking for answers from a diverse steering committee that includes representatives from every aspect of the Children's Center, as well as a dozen patient families. 

"This is something we can do now. We don't have to wait until [the new children's hospital building is completed in] 2011," says social worker Loretta Wall, a 42-year-veteran of the field who heads up the initiative. A few weeks ago, five subcommittees were formed to address parent/faculty education, policy and safety issues, youth activities, spiritual and cultural needs and external communication.

"At the highest level, our goal is to dispel this idea that it's parents versus doctors," says Hicks, a member of the steering committee. "We as parents need to remember that doctors and nurses take our kids home with them. They study, they read, they're still trying to figure out what's happening after they've gone home." At the same time, he says, parents can offer observations into their child's character, tendencies and needs that might alter care. Hicks is convinced that his occasional input hastened Robert's recovery. 

"I have this luxury now," says Hicks, who enthusiastically joined the steering committee when asked. "I can watch Robert sit in his highchair and say ‘Dad' and ‘yes!' I have this blessing to live this life. But there is another Robert out there, and another Robert's family, who will have to sit and watch their child's blood come out into a machine and go back in again. I want to do this for them."

—Michele McFarland



Johns Hopkins Medicine

About Dome | Archive
© 2007 The Johns Hopkins University
and Johns Hopkins Health System