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January 27, 2008

Caring for Francesca: Shortage of nurses strains Mountain Top family as it copes with 3-year-old's illness

Shortage of nurses strains Mountain Top family as it copes with 3-year-old’s illness

DAWN ZERA  Times Leader Correspondent

The Scaranos need help. They are a family trying to hold their lives together but, due to circumstances beyond their control, the task is becoming increasingly difficult.

Their daughter needs specialized care – and is approved to get 96 hours a week of nursing assistance – but because of a nursing shortage they are unable to find the help they desperately need.

Pam and Tony Scarano, owners of Tony’s Pizza, Mountain Top, are trying to juggle a demanding business that requires long work hours with maintaining a home, parenting a 10-year-old son and caring for a 3-year-old daughter with Rett Syndrome, a neurological disorder that affects her basic life functions and requires around-the-clock care.

Their little girl, Francesca, also has been diagnosed with a secondary lung problem, possibly a mutated form of cystic fibrosis, that affects her breathing.

Francesca Scarano has required nursing care since she was 2 years old. At 18 months, she was diagnosed by a neurologist in Philadelphia as having Rett Syndrome, for which there is no known cure.

Barring complications, her mother said, Francesca can live into her 40s.

The syndrome has been traced to a genetic mutation, but is not considered hereditary. Any expectant parent is at risk for having a child with the syndrome, according to the official Rett Syndrome Web site, www.rsrf.org. The syndrome is named for Adreas Rett of Austria, the doctor who identified it.

Children with the syndrome appear to develop normally until 6 to 18 months of age, when they start to regress, losing speech and motor skills, developing repetitive hand movements, irregular breathing patterns, seizures and extreme motor control problems.

Francesca has trouble sleeping because of a lack of melatonin, and is on seizure medication. She uses a feeding tube because she is unable to swallow.

Despite the complications, children with the syndrome, which appears almost exclusively in females, can appear healthy.

“Rett children are always very happy little girls; they smile and are beautiful, and have very much of an aura about them,” Pam Scarano said.

“A hard life for everyone”

The Scaranos’ daily life is unlike anything parents of healthy children could imagine. Weekdays are spent running to doctor and therapy appointments. Francesca cannot communicate because she no longer can speak or use her hands to signal trouble, but a tear rolling down a cheek can indicate problems such as a stomachache. That can cause a buildup of mucus, which can interfere with her breathing.

“My daughter, we believe, cognitively understands everything we say, but we cannot measure that capability,” Pam Scarano said.

The Scaranos cannot leave their daughter with just anyone. Aside from nurses, the only other caregiver the family can regularly depend on is Pam’s mother.

“We are quite exhausted. We need help,” Pam Scarano said. “It’s a hard life for everyone. You come together, or you fall apart.”

They are approved by a state Medical Assistance program for 96 hours a week of nursing care for Francesca, but can find staffing for only a third of that – 30 to 40 hours a week. They say there are not enough qualified nurses available for hire.

Barbara Pirrella-Sico, division director for Bayada Nurses, Pittston, said the Scaranos’ situation is not unusual.

“The home care industry nationwide does not have the nurses to meet the increasing demand,” Pirrella-Sico said. “It’s pretty critical. It’s an emergency, affecting lots and lots of families.”

At five Bayada offices in northeastern and central Pennsylvania, some 80 percent of clients are pediatric, Pirrella-Sico said.

“When people think of care, more often they think of the elderly. We do take care of elderly, but pediatric is growing,” Pirrella-Sico said. “We can’t keep up with the demand. No one can.”

One of the challenges that agencies such as Bayada face is an inability to offer competitive salaries in a profession in which qualified candidates are scarce.

Pennsylvania in particular, Pirrella-Sico said, has made it difficult for home health care employers by keeping the Department of Welfare’s shift nursing rate the same since 1993. Most families requiring home health care qualify for financial state Medical Assistance, regardless of family income.

“Meanwhile, since 1993, costs have gone up, insurance has gone up, payroll taxes have gone up, but our reimbursement has not,” Pirrella-Sico said. Bayada has hired a lobbyist, who has been meeting with legislators to explain the situation.

But it may be a while before the situation changes to help families such as the Scaranos, who want to hire the nursing help they have been approved for.

“They are one of hundreds and hundreds,” Pirrella-Sico said. “My heart goes out to each and every one, because their lives are disrupted. And parents are risking employment to care for their children.”

Obtaining care a top priority

That rings true for the Scaranos. Business demands have to be put on hold when emergencies arise. Case in point: Tony recently had to leave the restaurant to rush home and help the nurse when his daughter had an attack while Pam was running their son to a doctor’s appointment.

Another time, before Christmas, Pam was working a Friday night at the restaurant while her mother was home with Francesca, and an emergency arose.

“I had to rush home, just walk out of my restaurant with people everywhere,” Scarano said. Although it put her business at risk, there was no choice but to get home as quickly as possible. “It’s sad when you have to make the choice between putting food on the table … I just want to have some normalcy with everyone.”

Obtaining the care Francesca needs is the Scaranos’ immediate goal, and may be all they can hope for. While scientists have been able to reverse the disease in mice, Pam Scarano says a cure for humans may not be forthcoming until the next century.

“We are quite exhausted. We need help. It’s a hard life

for everyone. You come together, or you fall apart.”

— Pam Scarano

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