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Family advisory council making it easier for parents of tiny babies

BY KAREN SHIDELER

The Wichita Eagle

"Nothing is going to make having a baby in the NICU a good experience," says James Wilson, the father of triplets who started life in the neonatal intensive care unit at Wesley Medical Center.

"But this is going to make it a lot easier."

"This" is the Wesley NICU family advisory council, of which Wilson is the chairman.

It's a new concept at Wesley, part of a nationwide focus on realizing that a hospital patient is more than an individual in a bed.

Sarah Mosier, neonatal nurse liaison at Wesley, said families have always been part of the picture in the NICU.

But in the past, care was family-focused, she says, meaning that doctors and nurses provided treatment and created a plan for the family to follow.

Family-centered care, she says, is a collaboration that includes parents as partners in the care.

The Wilson triplets were born in February 2007, 28 weeks into Maranda Wilson's pregnancy. Two of the girls were in NICU for 48 days; the third was there for 96 days. Once the girls were home, the Wilsons started hearing about family advisory councils at other places; he contacted Mosier, who already was working on the idea.

James Wilson and six to eight other parents whose babies were in the NICU can be matched with parents of babies there, for one-on-one partnerships. Mosier hopes there will be a "coffee time" on the unit at least monthly.

At a recent coffee time, Wilson says, one mother confessed, "I'm scared to bring my baby home. Did you guys feel that way?" Wilson says it's one thing for a doctor to say, "Well, that's normal," and another to hear fellow parents say, "Yes, we were terrified."

Mosier says the parents also will review the NICU policies, procedures and educational materials. "They have a point of view that we are unable to give," she says.

Many of the council members spent their first Mother's Day in the NICU, Wilson says, so the group plans to give flowers to the mothers there this year.

Paula Delmore, neonatology manager, says Wesley has looked to the Institute for Family-Centered Care, a national nonprofit, for help in understanding that patients are part of a family unit and that, as consumers become more engaged in their health care, providers have to be willing to listen and accept input from patients.

"We're going to have a wonderful partnership."

The family advisory council board meets once a month. Those interested in joining the group can e-mail Wilson at fac.wesley@gmail.com.

Reach Karen Shideler at 316-268-6674 or kshideler@wichitaeagle.com.