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| Help with the hardest decisions |
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To help the medical staff grapple with ethics |
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BORN NEARLY THREE MONTHS premature and weighing just 480 grams—barely more than a pound—Kathryn was small even for her birth age. She was born blue, with several defects in her immature heart and a list of respiratory and digestive complications. A month into her critical care and still so small she could be cupped in a pair of hands, she was receiving six different IV drips, was wired to an array of monitors and was being fed through a tube in her nose. Her parents imagined that the only reason they would be allowed to hold their fragile daughter would be to say goodbye. But Kathryn wasn't dying—as it would turn out, she had a long, complicated and largely unpredictable struggle for life ahead of her. Kathryn's team of care providers in the Neonatal Intensive Care Unit (NICU) at Children's Hospital Boston were taking steps to care not just for the sick child, but for her whole family. Allowing Krista and her husband Rick to hold her was the first step in helping them become the attached and involved parents they would have been under more normal circumstances. "We really want parents to get involved in any way they can," says Jennifer Bilak, RN, the nurse who helped the couple take that early step toward bonding. "Even if it's in small ways, like taking their child's temperature or changing a diaper, parental involvement is important." After some initial anxiety, Rick and Krista quickly warmed up to holding their child. Now, says Bilak, "they know everything about Kathryn's condition and every aspect of her care. I've never known parents who've been more involved." Although it is no quick or easy task, one of the most crucial aspects of neonatal nursing is helping parents to be parents in spite of the extraordinary hardship of critical illness—or, as Christine Mitchell, RN, Children's ethicist and a frequent advisor on complex NICU cases, puts it: "Helping parents learn to love an imperfect child." The staff is always careful, however, to provide information and guidance day by day and not overwhelm parents with too much, too fast. For many parents who are just coming to terms with their child's illness, the intensive care environment is already overwhelming.
The dual roles of caring for each child and educating that child's family require a level of nursing expertise that is difficult to overstate. The 20-bed unit is a tertiary referral center for the region, which means that the most complex newborn cases from New England (and increasingly from beyond) get sent to Children's for highly technical, specialized care. In addition to premature infants, there are babies who suffer a wide variety of problems requiring surgery. Some are followed prenatally by Children's Advanced Fetal Care Center and transferred to the NICU after birth; others come to the NICU to grow strong enough for heart-lung bypass, neurosurgery or other sophisticated procedures available at Children's. Because the hospital offers so many specialized care services, the 85 nurses who work in the NICU see just about every type of neonatal problem possible. The complexity of Kathryn Cappuccio's case owes to her "micro-preemie" size. After the first month of her critical care, she continued to present doctors and nurses thorny problems related to her underdeveloped heart, lungs and digestive system. Children's cardiologists developed strategies to deal with the holes in her tiny heart and the dangerous narrowing of her aorta, while the NICU staff worked to help her grow, maintain her respiration and manage every complication that came up along the way. "Kathryn is difficult," says her mother. "She never does anything anyone expects her to do. But still, nothing she can throw at the nursing staff throws them for a loop." THIS LEVEL OF EXPERTISE IS EXPECTED of nurses in the NICU. Patty Hickey, RN, vice president of Cardiovascular Nursing and Critical Care, explains: "An expert nurse recognizes patterns and trends in a child's health. She can look at a patient and integrate the diagnostics and the numbers with what she knows about the child from the personal experience of being at the bedside every day." According to NICU pediatrician Karen Levine, MD, that kind of expertise is typical of NICU nurses' collaborative working relationship with doctors on the unit. "Because the nurses have constant contact with the patients, we rely heavily on them for information," she says. "This goes beyond more obvious indicators, like how much oxygen they are absorbing, to more subtle signs, such as changes in abdominal girth or decreased bowel sounds."
Karen Stebbins, RN, who came to Children's NICU in 1991 after four years in cardiac intensive care nursing, is a senior nurse who gives advice, mentorship, guidance and clinical expertise to teams of three to five other nurses, who in turn provide continuous bedside care to patients. Stebbins explains the expertise that goes into NICU nursing with an example from Kathryn's care: One day, when Kathryn was very unstable and her heartbeat was irregular, one of the younger nurses on the team was coming on shift to care for her through the night. The two of us spent hours going over Kathryn's specific issues from the day. We pored over her EKGs and talked about specific indicators to watch out for." With an attending cardiologist and a staff pediatrician, Stebbins developed several plans for Kathryn's care based on possible changes in her condition, an important step, says Stebbins, because "We didn't get caught up focusing on the irregular heartbeat itself. Instead we thought proactively about the big picture—for example, how her changing condition would affect her eating and breathing." According to ethicist Christine Mitchell, that big picture isn't limited to the child's medical condition. "Nurses are expected to participate in the clinical evaluation and diagnosis of the whole child," she explains. "Not just the illness, but also what that illness means to the child's life and to the family." THIS WHOLE-FAMILY APPROACH was central to the care Beth and Eric Orifice received in the NICU when their son Eric was born four months premature with heart and lung issues similar to Kathryn Cappuccio's. He was so sick that staff at the hospital where he was born advised his parents not to try to save him—but Beth and Eric weren't ready to give up, so they came to Children's. "The nurses always let us know what was going on and what they would do depending on changes in his situation," says Beth. They would say •he's doing what we expect him to be doing,' which was reassuring without raising my hopes too much." Most important, Beth says, "They educated us slowly and didn't overwhelm us with everything we needed to know right away." Toward the end of their stay, Eric suffered bleeding on his brain, an uncommon complication in preemies that required the NICU staff to call in specialists from Children's neurology team. "Karen Stebbins stayed with us as we met with the neurologists, and stayed with us after that conversation to make sure we understood everything that was going on." When the parents returned to the NICU, half a dozen nurses came over to reassure them, and then left them to have some time alone. "They knew exactly when to jump in, and knew exactly when to back off," says Beth. In addition to all of their clinical care, the nursing staff was equally attentive to the Orifices' needs as a family, particularly their daughter Alyssa, who celebrated her second birthday while her baby brother was in the hospital. "At first we didn't know what to tell Alyssa about Eric," says Beth. "We thought about not telling her about her brother at all, because how do you tell a 2-year-old that her baby brother might die?" The nursing staff advised them not to hide anything from Alyssa, and to simply explain that because her baby brother was a little bit small, they were going to take care of him at the hospital for a while. "We were concerned about bringing her into the hospital, but the nurses were right: she didn't see the tubes and wires, she just saw a baby. And while we were there, the nurses helped her color and took her for walks." Today the whole family is doing well. Informing and educating parents, says Stebbins, is a key component to successful nursing. "Since having my own kids, I approach this job in a different way," she says. Nine years ago, Stebbins' first daughter needed intensive care as a newborn. "I can really empathize with how overwhelming this place and this experience can be. Every parent has an image of what their child's birth is going to be like: mom is going to give birth and hold the baby on her chest and everything will be great. When that doesn't happen, parents go through a huge amount of grief." NICU nurses must help parents get through that grief, says Stebbins, so that they can reclaim their role as a parent in spite of everything. For Krista and Rick Cappuccio, who on April 23 brought their daughter home from the hospital for the first time, the information, support and care they received helped them through more than four exhausting months of uncertainty. "In the very beginning, it was hard to even look at Kathryn," says Krista. "But then one of the nurses said to us, 'If she dies, do you want to have never known her?' That's when we started to take it day by day. We started to feel comfortable touching her and changing her diaper. We started taking care of her."
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