Children's Hospital Boston Children's Extended Care Center
profiles of
 Meaghan Devaney
Meaghan Devaney, 18, shares her father's love for opera, especially Les Contes d'Hoffman by Offenbach. "When she comes home for visits, she wants to listen to the tape in the car, over and over," says her father, Bob Devaney.

Meaghan's responsiveness and enormous capacity for joy made the decision to place her at CECC in 1984 very difficult, especially for Bob. "She would squeal with delight when I came home, as an infant does," says Bob. He saw Meaghan, his only daughter and youngest child, with a father's loving eyes.

Meaghan's mother, a pediatrician, held both a personal and professional view. "Her problems were so complex, and she needed so much from us, that I felt long-term placement was best for her and for us as a family," says Kathy Devaney.

Meaghan's brothers Robert and Stephen were 8 and 6 when she was born.

Brain damage occurred at Meaghan's birth when an antibody destroyed platelets in her blood, a process similar to Rh disease. This caused bleeding in her brain as well as excess fluid (hydrocephalus) that was treated by a shunt. Meaghan went home with a variety of medical problems including seizures, esophageal reflux (food backing up from the stomach into the lungs), and spasticity. After a few months her parents noticed that Meaghan could not see, and later learned that even though her eyes were functioning normally, her brain could not process the information.

"As time went on the developmental issues became more apparent," says Kathy. "We knew that her ability to hold her head up, and to sit up, would be delayed. Slowly we had to accept that she would never do those things."

Meaghan lived at home with her family for six years, undergoing a variety of elective surgeries until she grew very ill and had to remain hospitalized for several months. She had difficulty breathing and eating, underwent stomach surgery, and developed pneumonia and an infection in her blood.

Later her parents tried out CECC as a two-week respite and then decided to seek long-term placement. "In a way, it was better, because we eased into the decision to place her," says Kathy. "We were very impressed by the place. Meaghan was happy and receiving better care than we could provide at home.

"I fully expected the technical and medical aspects of her care to be better than we could give her," says Kathy, "but I never dreamed she would find the love and nurturing she had at home. I was wrong."