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Article Excerpt
"My son Ryan was born like any other child--he came into the world very easily, and he looked perfect. His was a normal, beautiful birth that made me cry like a baby. Ryan. He was placed on my wife's chest after delivery, but then he was quickly put into a bassinet for observation. We did not know then that our momentary joy of holding Ryan, free of tubes, oxygen, and probes would not be repeated for a long time to come."--Jeff Wills
Background
Ryan Milton Wills was born on a beautiful winter afternoon, February 23, 2001, after an uneventful full-term pregnancy. He was the second child of Anne and Jeff Wills. Ryan's brother, Greg, was 4 years old then, and the picture of health. At the time of Ryan's birth, Anne had recently left her position as an internist in private practice to spend more time focused on the family. Jeff supported the family as a sales manager in the semiconductor industry. The Wills family considered the summer before Ryan's birth their "golden summer," a time of happiness, fun, love, and commitment to a growing family.
Shortly after his birth, Ryan was sent to the hospital's Level Ill NICU due to respiratory distress. At the time, Anne and Jeff viewed Ryan's time in this setting with optimism, considering his stay in the NICU to be nothing more than a "speed bump." For several weeks, while in this NICU, Ryan was considered a medical mystery, and after a month of continued difficulty, he was transferred to Level IV NICU for a more thorough work up and diagnosis.
In this new setting, Ryan was seen by numerous specialists before eventually, at 7 weeks of age, a lung biopsy suggested pulmonary hypoplasia characterized by incomplete development of the lungs. Because of the pulmonary hypoplasia, Ryan continually required the assistance of medical technology: oxygen, feeding tube, monitor, and in the end, ventilator, dialysis catheter, and continuous electroencephalogram (EEG). The pulmonary hypoplasia also led to Ryan being in and out of the hospital frequently: in fact, this occurred nine times during his nine months of life. While at home, Ryan required 24-hour attention and care, provided by his parents in shifts. Anne cared for Ryan, as well as his brother, during the day, and Jeff cared for him during the evening. At night, Anne and Jeff took turns sleeping next to Ryan so they could easily hear and attend to him.
Early on during Ryan's illness, Anne and Jeff were committed to doing everything they could to "cure" him. Yet, when he was around 4 months old, they realized that his condition was life-threatening and that a "cure" might not be possible. They continued to focus on providing Ryan with the best care possible so that he might have a chance to live. At the same time, after much thought, Anne and Jeff broadened their vision for their family. They focused on two additional priorities: assuring that Ryan knew he was loved and cared for, and resolving not to lose a sense of family during Ryan's illness. This clarity of focus enabled them to have the strength, in Jeff's words, "to do what was important, no matter what it took."
Ryan received the best of care both at home and during his many hospitalizations. None-the-less, he died of complications related to pulmonary hypoplasia on November 29, 2001, at 9 months and 6 days of age.
In this article, Anne Wills and her husband Jeff share their reflections on their journey during Ryan's short life, in the hope that their experiences and thoughts may be useful to nurses and other care providers who work with children and families.
Anne Wills Speaks
I wish you knew ... how confusing and difficult it...
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