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Surviving Once-Fatal Childhood Disease Lifelong Fight

Emergency nurses are seeing children, adolescents, young and older adults with once-fatal child diseases, now commonly survived because of recent health care advances including transplants early in life. With the reality of childhood  disease survival comes unique problems in treating this special patient population, Laura M. Cridde, RN, PhD, CEN, CCRN, FAEN, explained to Annual Conference attendees Friday.

For adults with a pediatric disease the impact is mild to severe. When they present to the ED, nurses encounter previous surgical procedures, medications, lines, tubes and hardware. There is no way to fix many of these diseases, but we can treat them, she said.

Once considered fatal, disorders such as cystic fibrosis, biliary atresia, brain tumors, hydrocephalus, spina bifida, congenital cardiac anomalies, Down syndrome and hemophilia are now survivable. But there are long-term effects of surviving these childhood diseases, said Criddle.

“That these kids made it to adulthood is somewhat of a miracle,” she continued, and “we’re appalled now that children die.” For the first time in history, patients with pediatric conditions move to adult and geriatric care, she said.

Open heart surgery is performed on Down Syndrome babies extending their life span from 9 years in the 1930s to 50-plus today. As adults, they face health problems such as mental illness, thyroid disfunction, seizure, Alzheimer’s disease and geriatric issues at age 45.

The incidence of Spina Bifida, a congenital neural tube defect, has dropped to 1,500 births per year in the U.S. and can now be picked up on an ultra-sound. With early surgical closure, 90 percent of babies with Spina Bifida will survive to adulthood. As adults, Criddle said they deal with hydromyelia, tethered cord syndrome, urinary and bowel issues, VP shunt problems, and musculoskeletal and immobility issues.

G.B.

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