Children's Hospital Colorado

Cindy and Micah: A Mother's Voice Changes a Hospital

To trach or not to trach - that question weighed on Cindy Desplinter for months. Her son, Micah, was having breathing challenges due to his cerebral palsy and faced the possibility - yet again - of undergoing a tracheotomy to help him breathe.

A closeup of a newborn baby with each parent soothing the baby with one hand.
An example of family centered care: A mother and father's hands support their baby just before a procedure.

At that time, two different Children's clinics, ear, nose and throat (ENT) and pulmonology, were treating Micah for his breathing problems; someone on one of the teams had to decide whether he would receive a trach.

Physicians and nurses in the two clinics saw Micah separately and without a forum to collaborate on Micah's care, it was difficult for them to make a decision.

"Getting a trach is a pretty big decision." Desplinter said. "It seemed like everyone had their own thoughts and mixed feelings about this. We kept bouncing around and no one had an answer for us."

Exasperated with the standstill, impatient while Micah continued to struggle, Desplinter pronounced her discontent.

She found a program at other hospitals that combined some services of ENT and pulmonology to address specific ailments. "Why doesn't Children's have this program?" she asked of Children's, and campaigned for the hospital to create its own multidisciplinary program.

Due in large part to Desplinter's advocacy, Children's launched its Aerodigestive Program in 2010, which provides comprehensive, state-of-the-art treatment and services for children with complex airway, respiratory and gastrointestinal track disorders. Here, one team of physicians can treat Micah for his breathing challenges.

Desplinter's determination to be her child's voice embodies one of Children's driving philosophies: Family Centered Care, which quite simply is "about developing a relationship between families and caregivers," said Kathleen Reeves, director of Family Services at Children's Hospital Colorado. "Families are the eyes and ears of this hospital and they help us be better. Parents have a history of understanding; they know what their children are like every day. They are an equal member of the health care team."

Family Centered Care manifests itself in hundreds of ways throughout the hospital, from helping parents administer their child's medication to implementing a home treatment plan to asking a nurse if she washed her hands.

Family Centered Care Day

On May 16, Children's will celebrate Family Centered Care Day to recognize hospital-wide efforts that encourage collaboration with families.

"It's a day to celebrate staff partnerships with families and highlight that what they do is really important," said Heather Fitzgerald, a neonatal intensive care unit clinical nurse and champion of the May 16 event. "We try to normalize for families what is really an abnormal situation. We want to share these stories which so beautifully illustrate the many ways we do this at Children's."

The event will include a parent panel and discussion, with a focus on stories that will inspire staff.

"Can we partner?"

Family Centered Care formally began at Children's in 1997 although talks about the program began as early as 1993. Family Centered Care consultant Tracy Price-Johnson helped begin those discussions after realizing how excluded she felt from decisions made about her daughter Hayley's care. Price-Johnson had moved to Denver in order for then 4-month-old Hayley to receive care at Children's for orthopedic, cardiac and pulmonary issues.

Along with other parents at the hospital, Price-Johnson "wanted to be involved in [her child's] care." Much like Desplinter, she approached hospital administration, including former CEO Dori Biester, and simply asked, "Can we partner?"

"I thought combining two necessary surgeries might make it easier for Hayley to recover than recovering from one surgery and then bringing her right back for another," Price-Johnson said, whose daughter had 27 procedures during her time at Children's. "Being involved in her care, I could coordinate it so much better."

Price-Johnson also helped create, and now co-chairs, Children's Family Advisory Council, a component of Family Centered Care and of which Desplinter is a member.

Over the years, Price-Johnson has seen significant changes implemented in the hospital because of family input, including a significant policy change that bravely diverged from the national standard.

In the past, when a child "coded" (needed emergency resuscitation), "parents were ushered out of the room and they didn't know what was happening," Price-Johnson said, and it caused anxiety, frustration, anger and confusion. Parents shared this feedback, helping create Children's Family Presence Policy in 2003, which allowed parents to stay in their child's room if he or she coded. In the room, parents witnessed physicians and nurses doing everything they could to save their child. It was a tough but visceral experience that deeply connected them to their child's caregivers.

"I don't know how to put it into words," Desplinter said. "They care. In Children's, you can say, 'I have a problem' and they will help you. They are not afraid to change."