OHSU Cacoon Nurses Help Change Babies' Lives for the Better

05/22/00    Portland, Ore.

CDRC's Program for Families of Children With Disabilities Connects Families With Services, Provides Training and Support

At 5 months old, Jasmine Ankeman was unusually small for her age. Jasmine's mother, Tracy Moore-Ankeman, brought her to a John Day health clinic to have her weighed. During the visit, she also told Marsha Delaney, R.N., she was concerned about more than just her weight. "She wasn't sitting up. She wasn't grabbing for her toys," Tracy said, "I thought she was deaf and blind because she wouldn't even look at you when you talked to her."

Fortunately for Jasmine and her mother, Marsha is not only a public health nurse, but also a Care Coordination nurse dedicated to working with children who have special health needs. CaCoon is a program of the Child Development and Rehabilitation Center at Oregon Health Sciences University. Marsha was able to help Tracy schedule an evaluation for Jasmine with a physician in Bend, 60 miles away, who diagnosed Jasmine with cerebral palsy. At that point, Marsha continued to offer support by helping them access therapy services that have made a big difference in Jasmine's life.

CaCoon is a statewide program that contracts with county health departments to provide public health nursing services to families of disabled children in the communities where they live. CaCoon nurses help parents who have children, birth through 20 years-of-age, coordinate services and find resources for their children. These children are affected by complex medical conditions -- such as, cleft palate, cerebral palsy, hydrocephalus and conditions related to prematurity -- that result in special medical, educational, vocational and social needs. CaCoon's mission is to empower families with skills to become as independent as possible in caring for their child. The nurses meet regularly with families to teach them special feeding techniques, how to manage medical equipment and connect them with existing social services, which are sometimes hard to access.

Program director for CaCoon, Catherine Renken, R.N., M.P.H., said, "The need for CaCoon nursing is getting greater. With advances in medicine, more and more kids with complex medical conditions are surviving."

CaCoon started in 1987 at OHSU and has proved to be a national model. It is funded, in part, by the Federal Maternal and Child Health Bureau. The program has been replicated in Wyoming and North Dakota. Delegates from other states have come to study the viability of implementing the program in their home states.

Thanks to CaCoon training, Marsha recognized that something was not right when she examined Jasmine, and was able to do something about it. Tracy said, "All Jasmine would do was lie there with her arms above her head," a pose that is common in babies with neurodevelopmental deficits. "If Marsha wasn't there we wouldn't have gotten any help. We wouldn't have found out 'till it was too late."

Because babies with cerebral palsy respond to occupational and physical therapy, the sooner they can begin therapy the greater the rate at which they will acquire skills. In addition, early interventions can make a difference in the level of independence these children will achieve as they grow -- having less need for social services later in life. With therapy once a week, Jasmine has made substantial progress. "Jasmine can roll over now, her arms are down at her sides more, she's even trying to reach for her toys and play. It's really great to see," Tracy said.

"Each case is different. Some need more help then others," Marsha said. "Some just need to know that there are people to help them and they don't need to go through this alone."

Tracy, her husband and their 4 year-old son have moved from John Day to Bend to be closer to services for Jasmine. CaCoon helped facilitate the transition by putting them in contact with people who could help them look for work and a place to live, as well as provide emotional support and other services. For example, the St. Vincent dePaul Society paid for a motel in Bend while they looked for housing and work. "Moving away from our family has been hard. We don't know anybody here," Tracy said. "But it's all worth it. Jasmine deserves the best. Marsha has been great. She definitely made a big difference."

More information about CDRC can be found at http://www.ohsu/edu/cdrc/cacoon/.

Photo Opportunity:

  • Tracy and her family are available for interviews at their home in Bend.
  • Marsha is available for interviews at the clinic where she works.