What Happens When Chronically Ill Kids Grow Up

Physically disabled young adults who weren't supposed to live this long find themselves hemmed in by an unprepared heath care system

Doctors once predicted that Miguel Guevara would not survive his childhood. Born with muscular dystrophy, he was told as a young teenager he would not see 20.

Then doctors delayed muscle deterioration with physical therapy. A spinal surgery fixed his backbone, which had twisted into the shape of an "S." Medicine helped with seizures, and constant respiratory treatments kept fluid from filling his weakened lungs.

A ruling in federal court will decide if Miguel Guevara keeps his in-home nurse.
Daniel Kramer
A ruling in federal court will decide if Miguel Guevara keeps his in-home nurse.
Guevara lost state-funded services when he turned 21. His mother, Lenny Lazo (left), works several jobs to support the family.
Photos by Daniel Kramer
Guevara lost state-funded services when he turned 21. His mother, Lenny Lazo (left), works several jobs to support the family.

Thanks to year after year of medical advances, Guevara survived. He is part of the first large generation of chronically ill pediatric patients to reach ­adulthood.

Trouble is, the adult care system is totally unprepared.

Guevara has lost his in-home visits from a physical therapist and regular trips to Texas Children's Hospital, because the "all services needed" blanket provided to children by the Medicaid system disappears at 21.

Other patients in this generation, whether on Medicaid or private insurance, struggle to find primary care physicians who see adult patients because few doctors exist who are trained to care for complex childhood diseases.

Guevara's in-home nurse thinks he needs a new piece of medical equipment for his lung treatments, but the state has balked at paying for the machine.

The nurse may be gone soon. Guevara's mother, Lenny Lazo, is engaged in a legal battle to keep state funding for nursing hours. A ruling is pending in federal court.

"They tell me I might qualify for someone to come in and clean his bed, clean his room," Lazo says. "That's not what I need. I need someone who can tell me when he's having seizures. I need someone who can tell me when he can't swallow."

Today, 22-year-old Guevara spends most of his time at his mother's home in northwest Houston. Apart from his mother and nurse, he rarely speaks to another adult.

His health is deteriorating. His muscles weaken, his fingers curl tighter into fists, and his arms contract closer to his body, permanently bent at his elbows in the shape of a V.

His mother or his nurse constantly straightens Guevara's legs or repositions his torso in the wheelchair to prevent pressure sores. Seizures are a threat, because Guevara salivates heavily and risks suffocating if no one is near to help.

"I used to straighten out my arms, but now this is as far as I can go," Guevara says.
_____________________

"Transition" is a buzzword among doctors. It refers to a developing area of medicine aimed at filling the black hole entered by patients like Guevara.

Dr. Cynthia Peacock, who runs one of the few transitional clinics in the nation at Houston's Baylor College of Medicine, says the number of sick children now living to adulthood has created the buzz.

"Back in the late '80s and early '90s, there wasn't a lot of [survivors]. They were kind of like a novelty," Peacock says. "Now the numbers are causing a problem."

About 90 percent of chronically ill patients — with diseases such as Down's syndrome, cerebral palsy, muscular dystrophy, cystic fibrosis and childhood cancer — survive into adulthood.

Each year, half a million of these patients become adults, about 50,000 of whom live in Harris and neighboring counties.

Peacock, who is trained to practice pediatric and adult medicine, worked as a pediatrician at Texas Children's Hospital for years. A doctor with her dual training, commonly referred to as a "med-peds," is ideal for the new transition population, but there aren't many. Sixteen of these doctors graduate each year from medical programs in Texas, about 300 ­nationwide.

Peacock left her job as a pediatrician to teach at Baylor, training doctors in combined medicine. She never intended to start a clinic, but the lack of physicians in the adult system for chronically ill patients made it a necessity.

Doctors at Texas Children's and Shriners Hospital for Children would often call with urgent referrals.

"What a lot of [the patients] did, they just kind of hung out. They didn't go seek care. They ended up being out there two or three years without care and they come to a critical issue, and they get sick," Peacock says. "So where do they go back to? They go back to Texas Children's Hospital. They walk into the emergency room. Then I get the call."

The patients were too old to receive service at the children's hospital, but could not find a physician for adults. As Peacock treated more patients while searching for permanent doctors, the calls became more frequent.

She eventually approached board members at Baylor, and the college agreed to fund a formal clinic. The clinic treats close to 300 "core patients" who will probably never find another primary caregiver, while a number of other patients are treated ­temporarily.

Peacock, who works with the help of another doctor, would like to treat more patients. The need is there, she says, but the funding is not. In fact, Baylor loses money each year on the transition clinic.

Children's hospitals are a favorite among donors, Peacock says, but adult programs are not.

"What's prettier, a bald kid or a bald adult?" Peacock says. "Kids are easy to work with; they tear your heartstrings."

Many of the patients in transition aren't mentally retarded, only "developmentally delayed" due to the physical illness. Peacock calls Guevara a smart kid who has talked about working on computers.

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