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Hope
Offsets the High Costs of Caring for
Lights are low, and starlight twinkle in the ceiling painted like the night sky. The temperature is a constant 75 degrees. "Despite the high-tech beds, ventilators, intravenous pumps, monitors, and computers that clutter the Neonatal Intensive Care Unit (NICU), I'm struck by the peacefulness of the environment," said social worker Anne Howell. "It's so hard to believe that here premature babies no larger than a Coke can are fighting for their lives." These unusual surroundings at Children's Healthcare of Atlanta and other hospitals are the home away from home for the nearly one in 10 babies (and their families) born at low birthweight in Georgia each year. Children's NICU provides comprehensive care for the high-risk newborn, including access to more than 400 specialists in more than 30 pediatric specialties. Children's cares for babies with the most complex and acute medical problems transferred from other NICUs in Georgia and neighboring states. Babies come to the Children's NICU most often because of complications from low birthweight or premature birth. Babies treated at the Children's NICU typically face problems with the respiratory system, the eyes, the brain and the bowel. The underdeveloped lungs of premature babies often need help breathing from oxygen and ventilators. However, this breathing support can lead to complications in a baby's lungs that last through childhood. One complication, bronchopulmonary dysplasia (BPD), results in highly sensitive airways that may constrict and decrease the ability to move air in and out of the baby's lungs. Depending on how severe the BPD is, the treatment can range from daily medications and home oxygen use to a tracheostomy and home ventilator. Premature babies receive frequent eye exams to check for the development and severity of retinopathy of prematurity (ROP). Its long-term impact on the premature baby can range from needing glasses to blindness, so it is important to detect and treat this complication as early as possible. Premature babies are vulnerable to brain bleeds--most commonly intraventricular hemorrhage. Treatment varies depending on each individual baby and can range from watchful monitoring of brain development to brain surgery. For some babies, this complication has relatively minor impact for the long term, for others, this complication requires lifelong follow-up care. Premature babies also are at greater risk for developing necrotizing enterocolitis (NEC), a disease that can destroy the bowel. Some babies with severe NEC may require surgery and long-term intravenous nutrition while the bowel heals. With NEC some babies struggle to get enough nutrition and face growth and development issues continue into their childhood. Howell recalls a 2-week-old infant who came into the NICU weighing less than two pounds. The baby was transported by helicopter because she developed NEC. She required surgery to remove the bowel that was no longer working to give her a chance at life. Specialists were able to do bedside surgery (she was too unstable to even travel to the operating room) and save enough bowel for her to survive. That little girl is now 3 years old and though she requires regular medical and developmental intervention, she is a happy, thriving child. Not all babies go straight home after they're discharged from the NICU. Approximately 10 percent will be transferred to another unit within Children's and 30 - 35 percent will be transferred back to the hospital that referred them to Children's for continued care.
Because Children's cares for the babies with the most severe problems, the average cost of care is higher than for many low birthweight or premature babies. At Children's, the average NICU cost for babies is $100,000, with some catastrophic cases peaking as high as $750,000. The financial burden of low birthweight falls not only on the state through Medicaid charges, but also on employers through direct health-care costs and additional costs in lost productivity of the parent who misses work to care for a child. Parents of babies in the NICU encounter overwhelming challenges. Beyond the stress brought on by their baby's medical problems and missing work, parents also struggle with caring for their other children. "We consider every family in the NICU in crisis because it is not normal for a newborn to stay in a hospital without the mother," said Howell. "The experience can be emotionally overwhelming, scary, and draining for any family, and can be intensified by stressors already in a family's life, like financial distress, loss of job, lack of support, and illness. Through a team approach, the hospital staff, parents, and family come to a daily place of understanding, hope, and coping. Each day is about getting the baby well and back home." One of the most exciting days each year at Children's is the NICU reunion. Always drawing a large crowd, this fun-filled event gives families and staff the opportunity to re-connect. The tears of desperation, loss, and sadness are replaced with smiles and laughter about the strength of these babies, how far they've come, and their many possibilities for the future. "Our greatest joy is to see the families who stop by the NICU for a follow-up appointment several moths after they've gone home, to say hello and show the growth and progress of their little one," said Howell. "And when a parent or family comes back to say, 'What can I do now?' we know a life has been touched in a way that will only continue to give back and strengthen the next person who will embark on this difficult journey." Marisa Frost is manager of Community Wellness Affairs, and Anne Milkowski is clinical manager for the NICU, at Children's at Scottish Rite. Children's
Healthcare of Atlanta For more information, visit www.choa.org or call 404-250-KIDS . Learn more about the Children's NICU. Read the first installment of this three-part series on low birthweight. |
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