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Patient Story
High-Tech Solutions Meet Critical Needs
Anna was born with a rare, genetic form of dwarfism. The term dwarfism describes a person of unusually short stature and can arise from a variety of genetic and other conditions. Although types of dwarfism, as well as their severity and complications, vary from person to person, most children with the condition lead full lives. But for the first two-and-a-half years of Anna's life, complications kept her at Riley Hospital for Children where she was closely monitored by pulmonologists, cardiologists and genetic specialists. Today, Anna breathes with the assistance of a ventilator, uses a wheelchair and has hearing aids and glasses. "I spent every day at Riley Hospital during those first few years,"said Julie Molloy, Anna's mother. "Before we had kids, we had the big house, two cars and great vacations. Once Anna came into our lives, we learned to quit taking so much for granted. We learned to look at the important things in life." Today, Anna lives at home in Greenwood, Ind., with her parents and her brother and is able to attend school largely thanks to the support of Riley's Home Ventilator Program. Several factors have allowed an increasing number of families like the Molloys to live with a technology-dependent child in their homes. The past decade has seen improved outcomes for children with serious and complex medical problems due to advances in health care technology. And, hospitals like Riley recognize that children need and deserve as normal a family life as possible. "Riley's Home Ventilator Program is designed for patients who have ventilators - or what is often referred to as respirators,"said Dr. Veda Ackerman, director of Riley's Home Ventilator Program and associate professor of pediatrics, IU School of Medicine. "Our mission is that technology-dependent children can go home to a natural family environment and lead normal lives." The term "technology-dependent" covers a wide range of conditions and circumstances. Technology dependence has to do with requiring medical devices to compensate for the loss of a vital body function. Sometimes this technology improves a child's life and sometimes a child's life depends on it. Technology dependent children like Anna often have extremely complex medical problems and nursing care needs, with technology representing just one facet of care. The staff of Riley's Home Ventilator Program provides children with medical care, nutritional support, speech therapy and case management - coordinating orders for medical equipment, at-home nursing care, medications and much more. They also strive to support the whole family through psychosocial support, school interventions and lending an ear from a person who knows what they are going through. "One has to respect these families tremendously for undertaking something like this. Juggling everyday life, other children and the responsibilities of caring for a child on a ventilator can be overwhelming," Dr. Ackerman said. The move from hospital to home typically includes a tremendous shift in responsibility. At Riley, trained professionals work in shifts over 24-hour days and have access to all sorts of equipment and resources. At home, family members are expected to perform similar tasks with much less formal training. The Home Ventilator Program is a much-needed resource available to these often emotionally and physically exhausted families. In the Molloy household, just getting Anna to school can prove a challenge. It takes 20 minutes to load the car with Anna's wheelchair, batteries, oxygen tanks and medical emergency supplies - not to mention homework, lunches, permission slips and Anna and her brother. Once at school, Julie Molloy makes three trips to get Anna, her wheelchair and 85 pounds of ventilator and oxygen equipment into the building. "We've been very fortunate," said Molloy. "It is possible with technology to do nearly everything that other families would do. It just takes us more time." Despite Anna's physical limitations, intellectually and emotionally she's a typical second-grader. Recently, in Anna's struggle to come to terms with her condition, she started blaming her mother. The Molloys called on Dr. Ackerman, who in return sat down with Anna and told her the truth, explaining that sometimes things just happen the way they do, and it's nobody's fault. "Dr. Ackerman does much more for us than just provide pulmonary care," said Molloy. "We try not to limit Anna, not to tell her she can't do something. If it comes down to that, Dr. Ackerman will always take the blame. And, usually that's the end of it." In most cases, Dr. Ackerman and the Home Ventilator Program team work with families from the time they arrive at Riley until well into adulthood. It naturally becomes a long-term relationship. The program staff celebrates milestones with patients - successes, birthdays, graduations. Families are encouraged to call or come in if they have any questions or concerns. Despite the conditions many of these families face, it's astounding to see how remarkably well most cope with the circumstances that would seem impossible to others. "It's not the end of the world, it's just a different world," said Molloy. "We're blessed to have such easy access to Riley Hospital and Dr. Ackerman." The next time you're driving through the southside of Indianapolis and you see a line of kids on rollerblades with a little girl in a wheelchair leading, smile and wave - that's Anna Molloy. |
There's nothing little about Anna Molloy's attitude. No one can say she is short on spirit or determination. Her 8-year-old body may weigh only 30 pounds, but her spunk more than compensates for her size. Summer softball, cookie stands and art classes are a reality for Anna that, not so long ago, the Molloys feared were little more than a pipe dream.
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