Doing what can be done

michael schechter

When Sammy Lamb died, his nurses at Children's Healthcare of Atlanta at Egleston were devastated.

Serving the youngest and most vulnerable

Serving the youngest

The demands of diabetes

They had been the boy’s most constant source of comfort and support, and he had clung to them like substitute parents. Emory pediatric pulmonologist Michael Schechter (pictured below), who directs the Emory Cystic Fibrosis Center (ECFC), grieved too, but he also was angry—10-year-olds should not die of CF

Sammy, however, lacked any semblance of a good support system at home. His parents abused drugs, and he lived in a constant cloud of cigarette smoke. Even as he grew more malnourished and his respiratory problems worsened, his nebulizers, breathing exercises, and nutritional supplements were ignored. He was brought back, again and again, to Emory. Sammy always seemed pleased when Schechter told him he needed to be readmitted to 5 West at Children’s. When told he could go home, he often wanted to stay in the hospital. 

A third of CF patients develop diabetes during their teen years. Sammy had full-blown diabetes by the age of 8. A quarter of patients with CF develop liver disease at or before puberty. Sammy’s came on early. He was in the hospital for several weeks at a stretch at least three or four times a year and had spent so much time out of school that he never learned to read. He spent 10 of his last 12 months in the hospital. 

Doctors and social workers at ECFC talked frequently with his parents and other relatives, none of whom wanted the boy, but also were in constant contact with state social workers. Foster care seemed not to be an option. “We did what we could,” says Schechter. “We probably could have beaten back the CF, but we couldn’t beat the perfect storm that was this child’s life.”

Most patients seen in the pediatric unit of the ECFC are luckier than Sammy in terms of their home environment—and most parents don’t forget or refuse, as his parents did, to do the Medicaid paperwork so the center and the hospital can be paid. But no one, not Medicaid, not even private insurance, is willing to pay more than pennies on the dollar for the intense, ongoing, complex treatment of any patient with CF.

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