Medically fragile kids losing team

Born prematurely, Sam Smith spent his first six months in the hospital. As fungal meningitis ravaged his tiny brain, doctors ventilated him and inserted a gastric feeding tube.

"They're saving babies so young now," Sam's adoptive mother, Robin Smith, said. "They're ending up very medically complex, and foster families are afraid to take them home."

The Medically Fragile Children's Program in North Charleston was created to help families like the Smiths. About 30 young patients, 14 in foster care, are served by the one-stop shop for numerous services, including primary care, speech and occupational therapy and medical equipment.

That lifeline is closing March 31, said John Sanders, administrator of the Medical University of South Carolina's Children's Hospital, which operates the program.

"When we announced it to staff, it was not 'what happens to us,' but 'what happens to the children,' " Sanders said.

Robin Smith knows what it will mean to her son: a dispersion of services. "We were in that situation before, and I don't want to go back," she said. "It's not that doctors and therapists out there aren't good. It's that you have this team."

When it came to potty training Sam, a supervisor took him to the bathroom every 20 minutes, and three therapists taught him how to signal he needed to go, pull his pants up and down and work on core body strength.

Kathleen Hayes, state director of S.C. Department of Social Services, said, "The program has been a national model for services of its kind."

The program bundled fees and services to Medicaid, a billing method federal officials said could not continue. To replace the program, the S.C. Department of Health and Human Services is offering a waiver program, which will cover treatment, using nurse coordinators to manage care.

The North Charleston program began in 2005 as a collaboration between HHS and Social Services for foster children. Adoption was a goal, and the rate of adoption for medically fragile children since the program began increased from about 8 percent to 50 percent, Sanders said.

For 20 years, Rene Myers and her husband have fostered children who are dying. "The children we take in, normally one at a time, do not have long to live," Myers said. "This is a ministry we have done."

When the program closes, Myers worries about the cost to the community and the strain on foster parents. More children will end up in emergency rooms or be given back to the system, she said.

The Smiths transformed their Awendaw living room into a hospital room when they brought Sam home six years ago. Robin Smith slept near him, on the couch, for months.

Sam has a narrow airway, a short bowel, mental retardation and autism. "I can call (the program) and say his breathing doesn't sound right, and I can see a doctor right away," Smith said. "You can't do that with a traditional pediatrician."

When the program closes, and her son's care spreads out to several offices, she'll probably have to wait until problems are full blown before seeking help, she said.

But her main concern is for foster parents considering caring for medically fragile children. "It's very scary to take home a child who might not live," she said. "More kids will be left in the hospital. Foster parents will not want to take them home."

Reach Jill Coley at 937-5719 or jcoley@postandcourier.com.